tag:blogger.com,1999:blog-85241066368211641672024-03-16T01:10:11.562+00:00Make a DifferenceUnknownnoreply@blogger.comBlogger140125tag:blogger.com,1999:blog-8524106636821164167.post-65948610624169202542020-03-28T08:15:00.000+00:002020-03-28T08:19:18.648+00:00Data? The word makes it sound like a lot of numbers. <div style="color: #454545; font-family: "Helvetica Neue"; font-size: 9pt; margin: 0in;">
<i>(This post was originally written for NIHR and was on the old website)</i></div>
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<span lang="en-US">The term itself seems to divorce it from the human aspect. Yet for health and social care data is fundamentally intelligence about us. It is our information.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">If we are to genuinely make a difference to healthcare then we all need to get up close and personal with data.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">We should all know that we can opt out and say no to our data being used. I am talking here about the stuff that is gathered about our illnesses, conditions and treatments not about our address when the NHS needs to be in contact.</span><span lang="en-GB"> </span></div>
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Equally, we should be able to know how we can shape the wider dialogue about the use of data. We should be able to easily find how to contribute to discussion at local NHS Trusts, General Practice and other organisations. We should be asked our opinions and perspectives. We should know what is being done with data to improve health and social care.</div>
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<span lang="en-US">When any research is being contemplated using large data sets there is, I believe, an absolute imperative to pro-actively reach out into the community to engage and involve the public. This has to go beyond having a couple of patient representatives on a committee.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">This more expansive approach to involvement is necessary if we are to maintain trust. It is needed if we are to fully understand and allay people’s concerns. It should be required as a means of exploring some of the more complex moral and ethical dilemmas that we are likely to face.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">Recent high profile breaches of data illustrate the importance of doing this constantly and well. It is not a matter of choice.</span><span lang="en-GB"> </span></div>
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For those of us in Patient and Public Involvement this is a real opportunity to encourage public presentations and open discussion on the use and value of data. Such events must be a true sharing of information.</div>
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<span lang="en-US">The patient communities in cancer have been very active over many years as they saw the potential of using and sharing data. We were invited to many meetings and present at events and conferences. Our combined voices have helped to improve diagnosis, treatment, care and survival rates by working closely together with clinicians, researchers and data teams.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">This knowledge is explained by Dame Fiona Caldicott, the NHS Data Guardian in the </span><a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/668729/NDG_Progress_Report_FINAL_v1.1.pdf"><span lang="en-GB">2017 Repor</span></a><span lang="en-US">t:</span></div>
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"Data about people’s experiences of health & social care has huge potential for improving services and discovering more effective treatments & ways to provide care. Those benefits will not be realised without public trust."</div>
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<span lang="en-US">Some of the most innovative practice, I have come across, in active involvement is actually with data in research.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">The team behind Cloudy with a Chance of Pain are holding an event in July to celebrate the way patient involvement has helped shape their research but also to let the public find out more.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">I attended a workshop for Nottingham BRC recently where patient were working in partnership to gather and analyse qualitative data.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">I am sure there are many other examples where the public are making a difference so please let us know.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">Last but far from least, we also need to know what happens with data that is used. It cannot be a one way street with the public providing all the information.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">We need to find ways to help us all to use data to remain healthy as well as make improvements when we are ill.</span><span lang="en-GB"> </span></div>
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<span lang="en-US" style="color: #454545;">These fabulous animations, from UseMyData</span><span lang="en-GB" style="color: #454545;"> </span><span lang="en-US" style="color: #454545;">are a great beginning - </span><a href="https://understandingpatientdata.org.uk/animations"><span lang="en-GB">https://understandingpatientdata.org.uk/animations</span></a></div>
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<span lang="en-US">Derek was one of two patient/public members of the Ministerial Data Strategy Board in 2018-19.</span><span lang="en-GB"> </span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-77888921117383782662020-03-12T16:19:00.003+00:002020-03-16T10:42:32.018+00:00Making Your Voice Heard <h2>
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<span style="font-family: "arial" , sans-serif; font-size: 10pt;">A few <i>notes from a workshop for members of the Patient Forum at the </i></span><span style="font-size: 11pt;"><a href="https://www.bsperio.org.uk/"><i><span style="color: blue; font-family: "arial" , sans-serif; font-size: 10pt;">British Society of Periodontology (BSP)</span></i></a></span><i><span style="font-family: "arial" , sans-serif; font-size: 10pt;">. </span></i><span style="font-size: 11pt;"><a href="https://www.bsperio.org.uk/patients/patient-forum/index.html"><i><span style="color: blue; font-family: "arial" , sans-serif; font-size: 10pt;">The Patient Forum</span></i></a></span><i><span style="font-family: "arial" , sans-serif; font-size: 10pt;"> is a great diverse group of those directly affected by gum conditions who want to improve gum health by being actively involved with BSP and dentistry. You can follow </span></i><span style="font-size: 11pt;"><a href="https://twitter.com/BSPerio"><i><span style="color: blue; font-family: "arial" , sans-serif; font-size: 10pt;">@BSPerio</span></i></a></span><span style="font-family: "arial" , sans-serif; font-size: 10pt;"> on Twitter</span><span style="font-size: 11pt;"><o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif;">An introduction</span></b><br />
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<span style="font-family: "arial" , sans-serif;">It may seem odd that a workshop on Making Your Voice Heard is facilitated by a throat cancer patient. I can assure you that there is no irony. I would actually say that I found my voice as a result of that experience. The diagnosis of a life threatening illness can tend to do that as it reminds us of the importance of living. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">I have found that being actively involved in health services and research helps me understand my health, make sense of what occurred and makes meaning for my actions.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Simply, I want to make it better for others and that is something that the great majority of people working in healthcare services also want to see. Being involved with researchers adds further value as we get an understanding of the much broader issues and the uncertainties. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">It is precisely our direct personal experiences that help us feel, think and give us the 'power' to make our voices heard. Such experiences provide us with information, knowledge and understanding. These can provide insights that are of great value to those providing health and social care services or seeking to do research.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif;">Start by thinking about what you want to improve or change?</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">We began the workshop by considering where people were in their experiences of the condition and what they wanted to improve. The professionals who were present joined in as they too have opinions on what needs to change.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">The group were asked to think about their experiences in 4 phases: <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">1) the time before diagnosis<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">2) the actual diagnosis<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">3) the treatments<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">4) living with on a day to day basis. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">This can be a useful way of moving beyond just <i>telling</i> our 'story' to <i>reflecting</i> upon the various events that happened. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Our experiences provide…<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-size: small;"><span style="font-family: "symbol"; font-size: 10pt;">·<span style="font-family: "times new roman"; font-stretch: normal; font-weight: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "arial" , sans-serif;">Information - about what happened where and when</span><span style="font-size: 11pt;"><o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="font-size: small;"><span style="font-family: "symbol"; font-size: 10pt;">·<span style="font-family: "times new roman"; font-stretch: normal; font-weight: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "arial" , sans-serif;">Knowledge - about living with our condition and being treated</span><span style="font-size: 11pt;"><o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="font-size: small;"><span style="font-family: "symbol"; font-size: 10pt;">·<span style="font-family: "times new roman"; font-stretch: normal; font-weight: normal; line-height: normal;"> </span></span><!--[endif]--><span style="font-family: "arial" , sans-serif;">Understanding - about what it feels like to us and our families</span></span><span style="font-size: 11pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">It can also help us consider what could be made better. We may want to change lots of things but it is sometimes best to start with something we feel strongly about and think that there may be a solution.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">The Forum members worked in two groups and chose to consider improving dentist awareness of gum problems and addressing aspects of service provision, particularly for those who might not be able to access service. <o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif;">Where to make our voice heard</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">In this instance, we presented to each other rather than to an individual or an organisation but in real life it is always worth considering who you are talking to, their role and what influence or power they have in helping deliver the change. <o:p></o:p></span></div>
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<a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "arial" , sans-serif;">A presentation to a local Commissioning Group will be different from a talk to room of dentists. It is therefore helpful when practicing your presentation to ask those listening to place themselves in the shoes of the intended audience.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif;">Shaping what we want to say </span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<i><span style="font-family: "arial" , sans-serif; font-size: 10pt;">The basic framework described below was used with Macmillan Cancer Voices and developed initially from the College of Health by Gillian Fletcher and Jane Bradburn. </span></i><span style="font-family: "arial" , sans-serif; font-size: 10pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">When we get a chance to make our voice heard it is worth having a framework in mind to help structure your thoughts and to make sure we cover a number of points. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">The groups were asked to think about what a) a clear statement about our personal experience (something short and pithy that catches attention) b) Policies or Statements (what guidance and information is there about gum health) and c) Any audit or observations about what others think (to show that you have talked to others)<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">It can be useful to describe the problem but even better to be able to suggest some solutions. It can be helpful to say how you might help.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">As we were in a practice or rehearsal mode the only rule was that any feedback had to be as a positive statement.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">The short presentations by each group were succinct, powerful and compelling. The points raised covered the good and the poor of patient experience, recent evidence about practice and addressed health inequalities. Attendees commented on how the framework helped them get their points across and that it didn't necessarily need a group.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">One last point, which we didn't touch on in the workshop, is about 'holding to account'. In other words, towards the end of any meeting with healthcare professionals or commissioners it is always worth asking <i>what</i> is going to happen next, <i>when</i> will it be done, <i>who</i> is going to do what, <i>how</i> will we know and <i>where</i> will we meet next.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif;">Learn from others</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Patient involvement has increased over recent years so it is always worth thinking about other patient communities with whom you might have things in common. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">For the BSP Patient Forum this might be head a neck cancers, patients with thyroid problems or having had a stroke. Quality of Life is a major factor in healthcare so you may wish to look at those doing research into eating, swallowing and fatigue. Access to services was repeatedly raised in the workshop so you may also to look at provision of services and the issues around the determinants of health. The recent <a href="http://www.instituteofhealthequity.org/about-us/the-institute-of-health-equity/our-current-work/collaborating-with-the-health-foundation-"><span style="color: blue;">Marmot Review 2020</span></a> makes sobering reading.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif;">And finally</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Remember, it is NHS policy to involve patients and public with the development of health services and with research. For many years, we were missing from the tables and from the discussions.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">A cartoon, years ago (I think it was in Punch), showed a Consultant with his registrars all beside a patient in a bed. The Consultant holds his hand up to stop the patient speaking and says “When we want your opinion, we will give it to you!” It may be an exaggeration but it captures a certain truth about how things were. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">One medical journal illustrated us as ‘alien creatures’ at the table at the concept of us being involved with research.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">We are not at these meetings to be the clinicians, the researchers or the scientists. That it their job. We are present to remind them of the purpose, provide insight from our experiences and together help create and develop the future.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">What was particularly assuring about the workshop was the commitment by </span><span style="font-family: "arial" , sans-serif; font-size: 11pt;"><a href="https://www.bsperio.org.uk/"><i><span style="color: blue; font-size: 10pt;">British Society of Periodontology (BSP)</span></i></a></span><span style="font-family: "arial" , sans-serif;"> to involving people with direct experience of gum disease but also their intention to have representation on their Council.</span><span style="font-family: "arial" , sans-serif; font-size: 11pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Thank You to all the members of the Patient Forum and Professor Ian Needleman and Professor Nikos Donos, the 2020 President of the BSP.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;">Note: The BSP Patient Forum is supported by an unrestricted grant from Glaxo Smith Kline and it was so good to see a member of their staff in attendance and taking an interest in how patients can be involved.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif;">Further Reading</span></b><span style="font-family: "arial" , sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif;"><span style="font-size: small;"><i>You might like to read some of my other thoughts on </i></span></span><span style="font-family: "arial" , sans-serif;"><span style="font-size: small;"><i><a href="https://derek-online.blogspot.com/2018/03/patient-advisory-groups.html"><span style="color: blue;">Patient Advisory Groups</span></a> written for the Nottinghamshire Breast Cancer Group. This continued with <a href="https://derek-online.blogspot.com/2018/04/patient-advisory-groups-part-2-from.html"><span style="color: blue;">From Story to Reflection - Part 2 </span></a><span style="color: #454545;">; </span><a href="https://derek-online.blogspot.com/2018/05/patient-advisory-groups-part-3-purpose.html"><span style="color: blue;">Purpose and Plans - Part 3</span></a><span style="color: #454545;"> and </span><a href="https://derek-online.blogspot.com/2018/10/patient-advisory-groups-part-4.html"><span style="color: blue;">Developing People - Part 4</span></a><span style="color: #454545;">. </span></i></span><span style="font-size: x-small;"><o:p></o:p></span></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-26095118902728132432019-09-30T14:25:00.003+01:002019-09-30T14:30:21.570+01:00Patient, Public Involvement (PPI) in industry-led research – bringing charities and industry closer<b><span style="font-family: "arial" , "helvetica" , sans-serif;">A Guest Blog Post from Claire Nolan on important new guidance...</span></b><br />
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<a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">I am delighted and proud (as well as relieved!) to say that last week saw the launch of the Charities Research Involvement Group’s ‘</span><a href="http://slginvolvement.org.uk/wp-content/uploads/2019/09/Supporting-PPI-in-industry-led-research_Guidance-for-Charities_CRIG-HRCI-public.pdf" style="color: #954f72; font-family: Arial, Helvetica, sans-serif; font-size: 11pt;">Supporting Patient and Public Involvement in industry-led research: guidance for charities’</a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">. Developed and written with my colleagues in the group, I’m thrilled to have been lead author, especially as it was my first ‘gig’ as a freelancer.</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;"> </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This is a much-needed guidance, which hopefully complements the brilliant resources already out there but takes a step by step, practical approach to helping charities in the UK with where to start when considering working with industry to support PPI.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9T0io1pcu8vXhHMzIcstEzKOhEo3aUvvFJixAFZ_awjwI90lOCmfS4tXPp8BXVLle-KHM6pLe8XSSumK9Sfeb1dIx6uY5qQyWtNddv1yETyH5wkqQegIAZ1ZrUhAt1JaCJFYga2OzIvg/s1600/SLG.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="1062" data-original-width="1566" height="135" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9T0io1pcu8vXhHMzIcstEzKOhEo3aUvvFJixAFZ_awjwI90lOCmfS4tXPp8BXVLle-KHM6pLe8XSSumK9Sfeb1dIx6uY5qQyWtNddv1yETyH5wkqQegIAZ1ZrUhAt1JaCJFYga2OzIvg/s200/SLG.jpg" width="200" /></span></a></div>
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<b><i><span style="font-family: "arial" , "helvetica" , sans-serif;">The resource I wish we’d had…<o:p></o:p></span></i></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Three years ago, as Research Involvement Manager at Parkinson’s UK, I started on my journey to understand how we could support the pharmaceutical industry to work with people affected by Parkinson’s to ensure their Parkinson’s research programmes were focused, sensitive and more likely to deliver better treatments, faster, to those people that needed it most. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Through our PPI programme, we’d already supported over 100 academic research teams to work in partnership with 120 people affected by Parkinson’s in the prioritisation, design and dissemination of Parkinson’s research. But whilst we had this well- established, successful programme in place to support meaningful involvement in academic research, replicating that in industry-led research was another thing altogether.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The complex nature of medicines development and approval processes, the systems, procedures and risk averse compliance departments as well as the multinational nature of pharmaceutical companies meant that even knowing where to start was a challenge. So, we started from the beginning and spent a good year networking, attending pharmaceutical patient engagement conferences and trying to make connections in this mystery world!<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We eventually connected with the <a href="https://www.ucb.com/">UCB (</a></span><span style="font-family: Helvetica; font-size: 12px;"><a href="https://www.ucb.com/">a pharmaceutical company)</a> </span><span style="font-family: arial, helvetica, sans-serif; font-size: 11pt;">Patient Engagement Lead for UK and together we worked to deliver patient involvement in two of their projects. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Our experience of working with UCB was an incredibly positive one. We worked together as a genuine team and the projects with them were examples of really meaningful PPI. But working with them was also complicated and time consuming, particularly with regards to the contractual process and internal approvals processes. We learned a great deal from our experience, and we wanted to be able to share that experience with others.<o:p></o:p></span></div>
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<b><i><span style="font-family: "arial" , "helvetica" , sans-serif;">It is here that the stars align to bring about this guidance…<o:p></o:p></span></i></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Through our <a href="http://www.slginvolvement.org.uk/">Charities Research Involvement Group (CRIG)</a></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;"> meetings we learned that other CRIG members including Versus Arthritis, Asthma UK and Autistica were also starting to work with industry to support PPI.</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;"> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, in July 2018, CRIG worked with the <a href="http://www.abpi.org.uk/">Association of British Pharmaceutical Industries (ABPI)</a>, to bring together pharmaceutical companies and charities to discuss how we could collaborate more to support PPI in research. An insightful meeting which, among other priorities, confirmed the need for a ‘how to’ guide for charities to understand how they could collaborate with industry to support PPI. CRIG committed to producing this guidance and in April 2019, as a new freelancer, I worked with CRIG members and some PPI contributors who had experience working with pharma to outline what the guidance should cover and then over the last five months have worked with those same charities and PPI contributors to produce it. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I hope that charities new to this area will find it useful, and I’m more than happy to discuss the guidance with any charities who are considering working with industry to support PPI (<a href="https://www.blogger.com/null">cnolanbusiness@gmail.com</a>).<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thank you to Derek for allowing me to gate-crash his blog and a big thanks to Bec Hanley and CRIG for the opportunity.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Claire Nolan<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.linkedin.com/in/claire-nolan-4a084a43/" style="color: #954f72;">LinkedIn</a><o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="http://slginvolvement.org.uk/wp-content/uploads/2019/09/Supporting-PPI-in-industry-led-research_Guidance-for-Charities_CRIG-HRCI-public.pdf" style="color: #954f72;"><b>Download the Guidance</b></a></span></h4>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-size: 11pt; line-height: 15.693333625793457px;">Note:</span></b><span style="font-size: 11pt; line-height: 15.693333625793457px;">The <a href="http://www.slginvolvement.org.uk/" style="color: #954f72;">Charities Research Involvement Group</a> is a collection of almost 40 charities who come </span><span style="font-size: 11pt; line-height: 15.693333625793457px;">together to share experience and best practice as well as tools and resources for supporting PPI. For over 10 years, members have work ed together to improve quality of PPI in research. For more information about CRIG, contact </span><span style="font-size: 11pt; line-height: 15.693333625793457px;"><u><span style="color: #1155cc;">admin@slginvolvement.org.uk</span></u></span></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-9043140746266170182019-08-29T20:41:00.000+01:002019-09-06T19:46:49.048+01:00Taking Part in Research - a relationship?<div class="" style="color: #0070c0; font-family: Arial; margin: 0in;">
<span style="font-size: small;">A </span><span class="" style="font-size: 12pt; font-style: italic;">pint</span><span style="font-size: small;">? Have you gone raving mad? [...] I mean, I came here in all good faith, to help my country. I don't mind giving a reasonable amount, but a </span><span class="" style="font-size: 12pt; font-style: italic;">pint</span><span style="font-size: small;">? Why, that's very nearly an armful! </span><span style="font-size: x-small;">(Extract from The Blood Donor - Hancock's Half Hour)</span></div>
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Tony Hancock’s portrayal of a blood donor still resonates today. Donation, that selfless act of volunteering to help others. After almost 60 years, since the broadcast, is it time to redefine the relationship, particularly as it applies to health and care research? </div>
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The concept of <span class="" style="font-style: italic;">giving</span> in itself implies <span class="" style="font-style: italic;">receiving</span> yet at times it may still feel, as Hancock observes, more like <span class="" style="font-style: italic;">taking</span>. This seems especially true in health and care research despite many robust efforts to make it more of a partnership. Too often, people take part in a study and never hear another word about it. Should this transaction become more of an on-going and transparent relationship?</div>
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<span class="" style="font-weight: bold;">Being clearer and more concise?</span></div>
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Over the past few months, I have been involved with the <a class="" href="https://www.hra.nhs.uk/">Health Research Authority</a> helping to develop their <a class="" href="https://www.hra.nhs.uk/about-us/what-we-do/our-transparency-agenda/">Transparency Agenda</a>. I am a member of the <a class="" href="https://www.hra.nhs.uk/about-us/what-we-do/our-transparency-agenda/research-transparency-strategy-group/">Strategy Group</a> and have attended various meetings and a number of the #MakeItPublic workshops. The consultation is now finished.</div>
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In this context, Research Transparency has four key elements:</div>
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<li class="" style="margin-bottom: 2pt; margin-top: 0pt; vertical-align: middle;" value="1"><span class="" style="font-size: 12pt;">Registering research</span></li>
<li class="" style="margin-bottom: 2pt; margin-top: 0pt; vertical-align: middle;"><span class="" style="font-size: 12pt;">Making the results of research public</span></li>
<li class="" style="margin-bottom: 2pt; margin-top: 0pt; vertical-align: middle;"><span class="" style="font-size: 12pt;">Letting research participants know about the results of the research</span></li>
<li class="" style="margin-bottom: 2pt; margin-top: 0pt; vertical-align: middle;"><span class="" style="font-size: 12pt;">Making data from studies available for further research.</span></li>
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I want to concentrate on the third element - <span class="" style="font-style: italic;">letting research participants know about the results of the research. </span>One of the commonest complaints from research participants is that they took part in a clinical trial and never heard anything further. In today’s world that looks like poor manners and may even seem unfair.</div>
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<span class="" style="font-weight: bold;">More than just the results</span></div>
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As the weeks have passed, my thinking has developed. I have begun to question whether it needs to be more than just informing those people who took part in a research study. </div>
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There are a number of factors influencing my thoughts. Medical advances in recent years have meant that many people are now living longer as against a time when research was often seen as something that took place at end of life. Smartphones and other digital technologies gave us instant access to information and enable communications which were unimaginable a few years ago. Thirdly, the public frame of mind has become more exacting in our expectations and rights.</div>
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In the past few years patients have changed from being seen as the subjects to being partners, actively involved with researchers. We have moved from just raising funds to being active supporters engaged in many different aspects of medical research. Trust has become a major factor with those who give to medical research charities. We have also raised our expectations of how we wish to be dealt with in many other aspects of life.</div>
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Interestingly, one of the most pleasing comments from research participants is just how many are touched when a researcher does actually keep in contact with them and how that made them feel informed and included. It was seen as a lovely thing to do - of good practice. These are matters of common courtesy, decency and in some respects as good ‘customer’ relations.</div>
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<span class="" style="font-weight: bold;">A Mutual Relationship</span></div>
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For health we are dependent on each other. Without our illnesses, conditions, diseases and ailments there would be little to actually research. Perhaps the whole consent process should be redefined as a two way procedure where, as participants we sign to join the study and the researchers sign as to the ways we can be kept informed? </div>
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<span class="" style="font-family: "arial"; font-size: 12pt;">This, for me, comes down to mutual respect and a better understanding the research practice and experience. It may be worthwhile reflecting on Mahatma Gandhi’s saying - </span><i><span style="font-family: "arial" , "helvetica" , sans-serif;"><span class="" style="font-size: 12pt;">A </span><span class="" style="color: #3c4043; font-size: 13.5pt;">customer</span><span class="" style="font-size: 12pt;"> is the </span><span class="" style="color: #3c4043; font-size: 13.5pt;">most important visitor</span><span class="" style="font-size: 12pt;"> on our premises. They are not dependent on us. We are dependent on them.</span></span></i></div>
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It is about knowing what we can expect, whether we will have the opportunity to receive updates on the progress of the study. This will be, I believe, be of importance with the development of <a class="" href="https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2535-5">Studies Within a Trial (SWAT)</a> as people might be keen to hear about other research.</div>
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I am not suggesting that all the information about a study is revealed for all. </div>
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It does not mean the actual evidence, the latest findings or any internal interim results. Transparency is about being distinct and clear. It is not being see-through.</div>
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<span class="" style="font-weight: bold;">Keeping in Touch</span></div>
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<span class="" style="font-family: "arial";">The first time I came across the good practice of keeping in touch with people who took part (healthy volunteers and patients) was the study on the </span><span class="" style="color: #333333; font-family: "helvetica neue"; font-weight: bold;">Long term impact of screening on ovarian cancer mortality </span><span class="" style="color: #333333; font-family: "helvetica neue";">- the</span><span class="" style="color: #333333; font-family: "helvetica neue"; font-style: italic;"> UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS)</span></div>
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They produced a Thank You card which simply acknowledged their gratitude and set out the key facts from the study. It was informative, thoughtful and touching.</div>
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Some researchers are using digital technology like <a class="" href="https://cloudywithachanceofpain.com/">Cloudy with a Chance of Pain</a> whilst others have set up either closed or public Facebook Groups. For example the ALPHA Eczema Trial posts regular information about trial registration, public workshops and where the trial leads are speaking through their Twitter account @LICTR_Alpha and website <a class="" href="https://ctru.leeds.ac.uk/alpha/">https://ctru.leeds.ac.uk/alpha/</a></div>
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This is about being more open and keeping in touch. It is not about the trial results. I am talking here about information as to whether the trial has recruited the numbers of people it needs, how fast or slow this is taking, whether the team is looking into other similar areas of research and if they want/need patient insights. </div>
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<span class="" style="font-weight: bold;">What might the relationship look like?</span></div>
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High quality peer reviewed research is necessary to improving wellbeing and healthcare. It requires rigour, time and to able to be reproduced. It does need to follow not however need to be entirely done in secret.</div>
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It seems to me that in a time of misinformation and distrust we need to focus more on being more<span class="" style="font-style: italic;"> open and transparent</span>. We need to develop greater <span class="" style="font-style: italic;">understanding</span> of each other’s perspectives and come to some form of <span class="" style="font-style: italic;">clarity </span>as how we communicate with each other.</div>
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<li class="" style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="1"><span class="" style="font-size: 12pt;">TRUST is a key factor. The importance of doing research with people not to them. It is why the whole movement to actively involve patients and the public is so vital - it provides opportunities to ensure that research is relevant, appropriate and suitable.</span></li>
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Trust is gained by explaining why the research is important and acknowledging the contribution made by the participant - that recognition and thanks. It is also about a cultural attitude that conveys the value of learning. You can read more in this <a class="" href="https://blogs.bmj.com/bmj/2018/09/13/derek-c-stewart-what-does-being-research-active-mean-for-clinicians-and-their-patients/">BMJ article about being Research Active</a>.</div>
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<li class="" style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="2"><span class="" style="font-size: 12pt;">UNDERSTANDING is at the heart of the words</span><span class="" style="font-size: 12pt; font-style: italic;"> informed consent. </span></li>
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is at the heart of the words<span class="" style="font-style: italic;"> informed consent. </span></div>
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This is the importance of a good Lay Summary and Patient Information Leaflet - especially when these have been written by people affected by the condition and checked by members of the general public. It is the mutual gain from the exchange of knowledge and experience on both sides that helps us all understand.</div>
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<li class="" style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;" value="3"><span class="" style="font-size: 12pt;">CLARITY around what, when, how and where information about the study will be made available. This should be the expectation of every study participant along with choices about how they wish to be kept in touch. </span></li>
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I now believe that we have to consider that trial participation is as much about an agreement, a more equal relationship between research and the public - a commitment to each other.</div>
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<span class="" style="font-weight: bold;">Finally, a request</span></div>
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I also know that there are many researchers who keep in touch with those who have participated in their studies. There are many trial participants who have welcomed this contact and others who have helped prepare the lay summaries. </div>
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Do you have any good examples to share? Please post examples using #MakeItPublic</div>
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<span style="font-family: "arial"; font-size: 12pt;">Thank you </span><a href="https://twitter.com/hnchelp" style="font-family: arial; font-size: 12pt;">Malcom Babb</a><span style="font-family: "arial"; font-size: 12pt;"> for drawing my attention to the lay summary of the results of th</span><span style="font-family: "arial"; font-size: 12pt;">e </span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-weight: 700;">De-ESCALaTE HPV Study </span><span style="font-family: "arial" , "helvetica" , sans-serif;">which clearly states - </span><b style="font-family: arial, helvetica, sans-serif;">Written by Patients for Patients. </b><span style="font-family: "arial" , "helvetica" , sans-serif;">Thank you <a href="http://mporthoptics/">Dr Marianne Piano</a>, who informs all her study </span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #14171a; white-space: pre-wrap;">participants at their final visit t<b>hey'll hear from me again in the new year with a dementia-friendly postcard laying out the study results </b>and what's happening next. </span></span><a href="https://twitter.com/mporthoptics/status/1168099829643431936?s=21" style="font-family: "Helvetica Neue"; font-size: 12px;">https://twitter.com/mporthoptics/status/1168099829643431936?s=21</a><br />
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<span style="font-size: large;"><b>THANK YOU TO EVERYONE </b></span><br />
<span style="font-size: large;"><b>WHO COMPLETED THE SURVEY </b></span><br />
<span style="font-size: large;"><b>(which is now closed)</b></span><br />
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Please Note: Derek Stewart is an advocate for patient voice in health and care research. He is a member of the HRA <a class="" href="https://www.hra.nhs.uk/about-us/what-we-do/our-transparency-agenda/research-transparency-strategy-group/">Strategy Group</a> and a <a class="" href="https://www.cancerresearchuk.org/about-us/how-we-are-run/our-members">Member of Cancer Research UK</a></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-91267397906458538162019-07-08T12:17:00.001+01:002019-07-11T08:59:43.103+01:00Keep Up to Date on Data<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Some interesting articles</b></span><br />
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<i style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: x-small;">There have been a number of interesting articles recently, I thought it might be good to curate some of these in one place. It seems really important that in the world of Patient and Public Involvement in Research we keep ourselves up to date on data.</span></i><br />
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<i style="font-family: Arial, Helvetica, sans-serif;"><br /><span style="color: #1f1f1f; font-family: "open sans" , sans-serif; font-style: normal; text-align: center;"><b><a href="http://usemydata.org/index.php">*useMYdata</a></b>, is a movement of patients, carers and relatives supporting the use of personal health data. They are great source of information and have a series of </span><a href="http://usemydata.org/casestudies.php" style="font-family: "open sans", sans-serif; font-style: normal; text-align: center;">Patient Advocate Stories</a><span style="color: #1f1f1f; font-family: "open sans" , sans-serif; font-style: normal; text-align: center;"> <span style="font-size: xx-small;">(1) </span></span></i><br />
<i style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1f1f1f; font-family: "open sans" , sans-serif; font-style: normal; text-align: center;"><span style="font-size: xx-small;"><br /></span></span></i>
<i style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1f1f1f; font-family: "open sans" , sans-serif; font-style: normal; text-align: center;"><span style="font-size: xx-small;">You can sign up for regular updates by emailing</span><span style="font-size: xx-small;">:</span><span style="font-size: xx-small;"> </span></span></i><a href="mailto:coordinator@usemydata.org.uk" style="box-sizing: border-box; color: inherit; font-family: Verdana, sans-serif; font-size: 15px; text-decoration-skip: objects;">coordinator@usemydata.org.u</a>k<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS9QZDv6Cz2etko-CuQaurgZfPLgc-jZgb7qtfqXx3fbGRBDZe58AgmNz_diTbgI49mQ-34uALLlAoTOej5FHv1NKVfdrYr4rgO4-231ovCRVISH4nCU0hgxMiwbMwthXAID1v8QzDN_Y/s1600/UPD.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="956" data-original-width="1306" height="146" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS9QZDv6Cz2etko-CuQaurgZfPLgc-jZgb7qtfqXx3fbGRBDZe58AgmNz_diTbgI49mQ-34uALLlAoTOej5FHv1NKVfdrYr4rgO4-231ovCRVISH4nCU0hgxMiwbMwthXAID1v8QzDN_Y/s200/UPD.png" width="200" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">If you are new to all of this then <a href="https://understandingpatientdata.org.uk/">Understanding Patient Data</a> <span style="font-size: xx-small;">(2)</span> is a good place to start. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It explains why, how and what Patient Data is used to improve diagnosis, care and treatment.</span><br />
<a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">They produce some really helpful YouTube <a href="https://www.youtube.com/watch?time_continue=49&v=5ZtgfXTACRs">animations</a> and other information.</span><br />
<span style="clear: left; color: #1f1f1f; display: inline; font-family: "open sans" , sans-serif; margin-bottom: 1em; margin-right: 1em; text-align: center;"><br /></span><span style="clear: left; color: #1f1f1f; display: inline; font-family: "open sans" , sans-serif; margin-bottom: 1em; margin-right: 1em; text-align: center;"><br />The <b>Association of British Pharmaceutical Industry</b> (ABPI), The <b>National Institute for Health Research</b> (NIHR) and the <b>Association of Medical Research Charities</b> (AMRC) held a Panel at their Pioneering Partnerships meeting</span><br />
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<a href="https://pharmaphorum.com/views-analysis-digital/digital-health-isnt-about-big-data-its-about-people/" style="font-family: arial, helvetica, sans-serif;">This article</a><span style="font-family: "arial" , "helvetica" , sans-serif;">, about the event, is a timely reminder that it is about people.</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"> (3) </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.hdruk.ac.uk/about/" style="font-weight: bold;">Health Data Research UK</a><span style="font-size: xx-small;"> (4)</span><b> </b>brings together those working and interested in the thinking and practice of use patient data. They have a <a href="https://www.hdruk.ac.uk/about/people/public-advisory-board/">Public Advisory Board</a>. Their <a href="https://www.hdruk.ac.uk/news-and-events/">News and Features</a> is worth looking at.</span>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>The Wellcome Trust</b> has just announced significant funding of £75 million in health data. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Just as the above article talks about people so Wellcome stresses the need for trust in their </span><a href="https://wellcome.ac.uk/news/new-programme-explore-how-innovation-health-data-can-benefit-everyone" style="font-family: Arial, Helvetica, sans-serif;">announcement</a><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">(5)</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> about the purpose of this investment.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrBsEfTWp9FygianQcw9GwL-xByfRcE43YiOD3Is5UfyBjBJ4nMXZYd75uApL7JZBHPxyEBNIQLrYXivsWrCoPNN4g8NjJFjARbAgceRRBS6Ss5B1oFb5_aVwbqRMSfJCrOOkmZQdPwqE/s1600/NDG.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="588" data-original-width="1600" height="73" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrBsEfTWp9FygianQcw9GwL-xByfRcE43YiOD3Is5UfyBjBJ4nMXZYd75uApL7JZBHPxyEBNIQLrYXivsWrCoPNN4g8NjJFjARbAgceRRBS6Ss5B1oFb5_aVwbqRMSfJCrOOkmZQdPwqE/s200/NDG.png" width="200" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>The National Data Guardian</b>, Dame Fiona Caldicott is calling for <a href="https://www.gov.uk/government/news/ndg-poll-findings-public-attitudes-to-organisations-innovating-with-nhs-data">a public debate on the future relationships between the NHS and those innovating using patient data</a> <span style="font-size: xx-small;">(6)</span> This follows the results of a poll of over 2000 people.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Of course in all of this, it is really important to give the sources of the data when reporting on research. Where did the data control come from AND have we thanked the patients? The <b>UK Data Service</b> provides a useful shortYouTube clip <a href="https://www.youtube.com/watch?v=cEGYw19FYn8&feature=youtu.be">Cite the Data</a>. <span style="font-size: xx-small;">(7)</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There are many big issues at stake here and I found the comments in <a href="https://www.opendemocracy.net/en/ournhs/the-nhs-is-embracing-big-data-but-whos-really-benefiting/">this article </a>from<b> Open Democracy </b><span style="font-size: xx-small;">(8)</span> a useful guide to the opportunities and risks. </span>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Websites linked above</i></span></span><br />
<a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "arial" , "helvetica" , sans-serif;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>1. Use My Data: </b></span>http://usemydata.org/casestudies.php<br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>2. Understanding Patient Data:</b> https://understandingpatientdata.org.uk</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>3. APBI, NIHR & AMRC</b>: https://pharmaphorum.com/views-analysis-digital/digital-health-isnt-about-big-data-its-about-people/</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>4. Health Data Research UK</b>: https://www.hdruk.ac.uk </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>5. Wellcome Trust Funding</b>: https://wellcome.ac.uk/news/new-programme-explore-how-innovation-health-data-can-benefit-everyone</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>6. National Data Guardian</b>: </span>https://www.gov.uk/government/news/ndg-poll-findings-public-attitudes-to-organisations-innovating-with-nhs-data</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>7. UK Data Service</b>: https://www.youtube.com/watch?v=cEGYw19FYn8&feature=youtu.be</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>8. Open Democracy</b>: https://www.opendemocracy.net/en/ournhs/the-nhs-is-embracing-big-data-but-whos-really-benefiting/</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have written other posts on data on this <a href="https://derek-online.blogspot.com/2018/12/health-care-data-improving-lives.html">blog</a> and a</span><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;">nother piece was in the NIHR </span><a href="https://www.nihr.ac.uk/blogs/data-the-word-makes-it-sound-like-a-lot-of-numbers/8627" style="background-color: white; font-family: arial, helvetica, sans-serif;">website</a><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif;"> </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-87033968799656868472019-05-12T17:31:00.005+01:002019-06-21T11:23:47.792+01:00Reaching OUT to involve Communities with Health Research<div lang="en-GB" style="margin: 0in;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>I love #WhyWeDoResearch </b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>It is, quite simply, an excellent example of REACHING OUT TO INVOLVE COMMUNITIES WITH HEALTH RESEARCH -</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i> For more on this very topic, follow the Tweetchat 13th May 2019 1200-1300hrs</i></span></div>
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<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i>@ClaireW_UK looked beyond her day job, asked how the health research community might be brought together using social media then just went ahead and did it. Gathered a few friends, began</i></span><i style="font-family: Arial, Helvetica, sans-serif;"> a few Tweetchats, then a number on a single day to a veritable smorgasbord of dialogue. Read more about the campaign in the BMJ <a href="https://bit.ly/2VyunDf">here</a>.</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The great, the exceptional and the unique <b>#WhyWeDoResearch TweetFEST 2019</b> took place from <b>Mon 13th May </b></span><span style="font-family: arial, helvetica, sans-serif;">for two weeks. Check out the # for all the tweets.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>Reaching out to colleagues, linking it to International Clinical Trials Day and encouraging others to host the conversations. It is led by the community and guided by Claire. It is whole community from research nurses, researchers and patients to research organisations, industry and leaders. It is WORLDWIDE. It is vibrant, exciting and fun.</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>The breadth is amazing - two full weeks this year - make sure you bathe your hands, do regular exercise and add some hand cream to keep your fingers agile and supple for full-on tweeting.</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>It is therefore a privilege and an honour to be kick starting #WhyWeDoResearch TweetFEST 2019</i></span></div>
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<span style="font-weight: bold;"><span style="font-family: "arial" , "helvetica" , sans-serif;">How do we do more to REACH OUT to involve communities in health research?</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This question lies at the heart of work I am doing with communities and colleagues in Nottingham. Nottingham University Hospitals Trust is a research active hospital and keen to see health research as a driver to improve health, wellbeing and social care. <a href="https://nottinghambrc.nihr.ac.uk/wp-content/uploads/2018/05/Nottingham-is-Research.pdf">Our Nottingham is Research Strategy</a> sets out our ambition.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Our enquiry led approach helps us to constantly ask….</span></div>
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<li lang="en-GB" style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;"><span style="font-family: "arial" , "helvetica" , sans-serif;">How can we do more to help improve peoples lives through health research?</span></li>
<li lang="en-GB" style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;"><span style="font-family: "arial" , "helvetica" , sans-serif;">How to we go beyond waiting for the person to arrive at clinic and work with communities to use health research?</span></li>
<li lang="en-GB" style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;"><span style="font-family: "arial" , "helvetica" , sans-serif;">How might patient and public involvement to reach out rather than selecting a few people to attend health research meetings?</span></li>
<li lang="en-GB" style="margin-bottom: 0px; margin-top: 0px; vertical-align: middle;"><span style="font-family: "arial" , "helvetica" , sans-serif;">How do we ensure that research evidence reaches out to change practice?</span></li>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">These will form the basis of the Tweetchat but let me offer a few examples…</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>REACHING OUT in GALWAY</b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNKrDM7EbvmGdBkxRZ7ijK5MVZzv3yIjoAl9mRPjAsWxhXRfezuBuUzC62UHWuYio1xptQBLRPu4U5kS7Njh1TKVer_p5NKaQHKDlZIAjfdlCaiM4MtIbxvYWY0-zsR54dy5j0AZ0W_ko/s1600/Dph%2525sBoVSsGzdPYut6yeCA.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="360" data-original-width="1600" height="72" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNKrDM7EbvmGdBkxRZ7ijK5MVZzv3yIjoAl9mRPjAsWxhXRfezuBuUzC62UHWuYio1xptQBLRPu4U5kS7Njh1TKVer_p5NKaQHKDlZIAjfdlCaiM4MtIbxvYWY0-zsR54dy5j0AZ0W_ko/s320/Dph%2525sBoVSsGzdPYut6yeCA.jpg" width="320" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">I was recently in Galway, Ireland for their Annual Patient & Public Involvement in Research event. It seems right to highlight a few examples of how they are Reaching Out. It is part of the Ireland Health Research Board - Ignite PPI.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-GB">First of all the event was help in a venue with easy access by public transport (next to the park and ride) at the </span><a href="http://www.nuigalway.ie/ilas/"><span lang="en-GB">Institute for Lifecourse and Society</span></a><span lang="en-GB">at National Universities of Ireland - Galway (NUIG). The </span><span lang="en-US">Institute supports applied research that informs policy development and practice to make a positive difference to people’s lives. A café on the ground floor invites you in.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Read more about the <a href="https://twitter.com/hashtag/PPIGalway2019?src=hash">@PPI_NUIG conference</a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Reaching out with Schools</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">They have a brilliant way for schools learning more about Clinical Trials through the START Competition - Read more at <a href="https://www.hrb-tmrn.ie/public-engagement/start-competition/">https://www.hrb-tmrn.ie/public-engagement/start-competition/</a> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">and watch an Introductory video here</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><a href="https://www.youtube.com/watch?time_continue=19&v=Rq0jwE8Ur3E" style="font-family: Arial, Helvetica, sans-serif;">START Q & A Session (05-02-19)</a></div>
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A further initiative is through Evidence Synthesis Ireland <a href="https://twitter.com/EvidSynIRL">@EvidSynIRL</a> where they are keen to make Medical Research findings need to be more accessible. They have engaged the journalist <span lang="en-GB"><a href="https://twitter.com/muirishouston">@muirishouston</a> </span>as their Writer in Residence - you can read the article in <a href="https://www.irishtimes.com/life-and-style/health-family/medical-research-findings-need-to-be-more-accessible-1.3819107?mode=amp">The Irish Times</a>.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRdG_oMIl7ON2ehUcQeLSnCeh9kBuOBNHgy2jFKBhGxB-EHafKok7rvKiszSxCC8uP7NPKxSS41GmmWHsQDF164XgHALFpOPtqxHbXemNFLqFJajrs4yjFdfi4nylDeNAcPXiivLVKdE0/s1600/AreWEReady.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1451" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRdG_oMIl7ON2ehUcQeLSnCeh9kBuOBNHgy2jFKBhGxB-EHafKok7rvKiszSxCC8uP7NPKxSS41GmmWHsQDF164XgHALFpOPtqxHbXemNFLqFJajrs4yjFdfi4nylDeNAcPXiivLVKdE0/s200/AreWEReady.png" width="181" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">Finally from Galway, they have been working with the <span style="background-color: white;">Medical University of South Carolina’s (MUSC) <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3267580/">Community Engaged Scholars (CES) Program</a>. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">Dr Carolyn Jenkins spoke at the </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">It will be really interesting to watch how this develops as it firmly about partnership working,</span></span></div>
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<span style="font-size: 11pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></span><span style="font-size: 11pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;">And if you thought it might be difficult to Involve people in science the you should read Dr Emma Dorris and colleagues <a href="https://www.biorxiv.org/content/10.1101/425371v1">here</a>. </span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd4E77yxwdbFArs8QQuWVZj7Kz36-PDJBJrmB-if0P41GAl0A6QFQwJ1izR9nIWpcRHTlWOthKKfvjJSA29m4Zgu3r8tNSeBN5NBqKg1FoyLmUDK2vlujcf4LS_NJVwpKg0Wx3Dge7NWY/s1600/Cloudy.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="274" data-original-width="268" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd4E77yxwdbFArs8QQuWVZj7Kz36-PDJBJrmB-if0P41GAl0A6QFQwJ1izR9nIWpcRHTlWOthKKfvjJSA29m4Zgu3r8tNSeBN5NBqKg1FoyLmUDK2vlujcf4LS_NJVwpKg0Wx3Dge7NWY/s200/Cloudy.png" width="195" /></a><span style="font-size: 11pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><br /></b></span></span><br />
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<span style="font-size: 11pt;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>REACHING OUT in the UK</b></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: 11pt;">There is the amazing <a href="https://www.cloudywithachanceofpain.com/">Cloudy with a Chance of Pain</a> which uses our smart phones to access</span><span style="font-size: 11pt;"> </span><span style="font-size: 14.666666984558105px;">meteorological</span><span style="font-size: 11pt;"> data to help understand </span><span style="font-size: 14.666666984558105px;">arthritis.</span><span style="font-size: 11pt;"> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSCW_nQ80j7XZ02h2bMSZK9Z3JEP0fzH_HZhIkwx9FfEi70zEvlAEr5hJXaqUz8DPpMgjc64Miz9DpiFE-bpXwMInc6HEigRcLtstggIQ7onhqFScy230CV8KpqbPmOuwwxocJOm0BC9o/s1600/Genes.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="346" data-original-width="1300" height="85" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSCW_nQ80j7XZ02h2bMSZK9Z3JEP0fzH_HZhIkwx9FfEi70zEvlAEr5hJXaqUz8DPpMgjc64Miz9DpiFE-bpXwMInc6HEigRcLtstggIQ7onhqFScy230CV8KpqbPmOuwwxocJOm0BC9o/s320/Genes.png" width="320" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: 11pt;">There is the equally amazing, <a href="http://www.genesandhealth.org/">Genes and Health - East London and Bradford</a> with over 37,000 people giving consent but with so much more going on to transform people's lives.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj31u96D7HKqKfsUmF68buv9REoARZVPug4UQAi33GNhpNNM56A2LY5YNx0JEauFLDw6oBJZnbjbd0R-rBeiQ-jTleegtB5Ek9g1iljrUdOZFUf1EykRFHjvz0AHwcFCsKRDKn4-3aYCB4/s1600/Harvey.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="522" data-original-width="358" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj31u96D7HKqKfsUmF68buv9REoARZVPug4UQAi33GNhpNNM56A2LY5YNx0JEauFLDw6oBJZnbjbd0R-rBeiQ-jTleegtB5Ek9g1iljrUdOZFUf1EykRFHjvz0AHwcFCsKRDKn4-3aYCB4/s200/Harvey.png" width="136" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: 11pt;"></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: 11pt;">And, yet another amazing example, <a href="http://harveysgang.com/">Harvey's Gang</a> showing how even complicated science can be communicated</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">You can watch the presentation - <span style="font-weight: normal;"><a href="https://www.youtube.com/watch?v=8hjcjjYwQZc">here</a></span></span></h4>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i>You can read more about some of the ways patients, carers and the public get actively involved in pre and non clinical research in a previous yet on-going post - <a href="http://derek-online.blogspot.com/2018/10/useful-sources-of-information-about.html">here</a>. </i></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-56024749836765339912019-03-03T22:19:00.000+00:002019-05-25T08:01:46.147+01:00What are the difference between some aspects of Qualitative Research and Patient/Public Involvement? <div style="font-size: 10pt; margin: 0in;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US" style="font-weight: bold;">What are the difference between some aspects of Qualitative Research and Patient/Public Involvement?</span><span lang="en-GB" style="font-weight: bold;"> </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-GB" style="font-weight: bold;">NB: If you can come to read about Knickers to Involvement, you will have to read the whole post ;-) </span></span></div>
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<span style="font-style: italic;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I struggle to describe and define the difference when asked this question at a workshop. I fall back on the easy response of referring people to the joint HRA/Involve paper. Putting my thoughts done here was initially prompted by a conversation with Kristina Staley and Bec Hanley. We just met for a chat over coffee and that conversation set us all thinking and these ramblings. </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US" style="font-style: italic; font-weight: bold;">PLEASE READ </span><span lang="en-GB" style="font-style: italic; font-weight: bold;"><a href="https://kristinastaley.com/2019/02/25/how-is-involvement-in-research-different-from-qualitative-research/">Kristina's Blog</a> </span><span lang="en-US"><span style="font-size: xx-small;"><i>where we are trying to set out our thinking in a chart<b>. </b></i></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US"><span style="font-size: xx-small;"><i><b>Please </b>use <b>#QualitativeandPPI </b>when responding on Twitter</i></span></span></span></div>
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<span style="font-style: italic;"><span style="font-family: "arial" , "helvetica" , sans-serif;">As for my thoughts….</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I suspect that it is an exercise in how little I actually know but I always find that seeing the printed word helps to clarify my thoughts. It allows me to hopefully apply some logic to unpick the issues. As with virtually all I write, it is an attempt to enquire - the purposeful use of a question in a search for sense.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At the outset, I should indicate my commitment to Qualitative Research is almost unbounded. I consider that it provides valuable evidence about people's opinions, attitudes and experiences of healthcare. I believe that all clinical trials that have a qualitative element have a greater potential to provide a broader understanding to help make better clinical decisions. I am therefore, I suppose, biased.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">The practices of both Qualitative Research and Patient Involvement have their own place in developing of improving people’s health and wellbeing. I would like to suggest that for the most part they are fundamentally different, yet at other moments they are almost joined seamlessly. They may even at times occasionally collide.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">Let me start by seeking to illustrate what I believe to be the difference.</span><span lang="en-GB"> </span></span></div>
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<span style="text-decoration: underline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Sharpening the Research Question</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A researcher may set a question based on validated qualitative evidence that requires further enquiry. It may be seen by the clinical and academic community to be the valid question to ask and therefore worthy of enquiry. Peer review may support the hypothesis that subsequently leads to a successful funding application.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Patient Involvement, however, can often give a more nuanced view about the research question. It is about how the question is phrased, the subtleties of tone in certain words.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have heard researchers say that by involving patients and the public that their question became much better. The changes proposed by actively involving patients and the public have been about making the questions sharper, more pertinent and precise to the needs of those who are the intended beneficiaries of the study. These discussions are rarely about changing the actual question or telling the researchers what to study yet some researchers see this as a genuine concern.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Patient involvement is firmly in the area of the ‘personal’ - the distinctive added value, driven by direct experiences. Qualitative Research seems to provide a synthesis of opinion.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">But where does Patient Involvement come together with Qualitative Research?</span><span lang="en-GB"> </span></span></div>
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<span style="text-decoration: underline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The Unanswered Questions</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">The use of the <a href="http://www.jla.nihr.ac.uk/">James Lind Alliance - Priority Setting Partnerships</a> enables patients and researchers come together to identify any unanswered questions.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">These partnerships gather the separate views of patients and researchers. This joint nature of this endeavour makes it then difficult to see exactly where the line between the two falls.</span><span lang="en-GB"> I am not sure this matters as it is the outcome of identifying the areas that need further research that are most important.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Let me offer another example focusing on a particular practical task...</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US" style="text-decoration: underline;">Personalising the Patient Information Leaflet</span><span lang="en-GB" style="text-decoration: underline;"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">We, patients and researchers equally, want Patient Information Leaflets that provide accurate and helpful advice about a study. </span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Qualitative research can provide useful evidence about what makes a good Patient Information Leaflet. It can ask for people’s views about how they might like to receive information. These studies can provide useful advice about content, layout and format. Yet, this qualitative research is often general advice and less study specific.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">Patient Involvement can give advice that is about the individual study. It can suggest the use of different words, changes in tone, alter the layout to make better sense. It is about the ‘personal touch’ from people who experience and know about the condition/illness being researched.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There is a strange dichotomy here that I, as a patient advocate, know about the work on Patient Information Leaflets, yet many researchers I work with don’t. Qualitative research can therefore inform and influence patient involvement and the latter‘s knowledge can inform about the value of this work.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.york.ac.uk/healthsciences/our-staff/peter-knapp/">Peter Knapp, a senior lecturer at York</a>, states that there is no evidence about whether this leads to more people taking part in studies yet it feels morally right and reassuring that patients have had a say in the development of the research.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">This personal perspective and moral compass can be replicated in adding value to inclusion criteria, recruitment, analysing data and in the way research is disseminated.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But, how else might we work together yet retain our separate perspectives?</span></div>
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<span style="text-decoration: underline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Patient as Partners in Qualitative Research</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I had the pleasure of attending a workshop in Nottingham where a researcher wanted to ensure that the work identified areas of genuine importance to patients, which researchers might miss when running focus groups.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">She and colleagues ran a half-day introductory workshop on the qualitative method they were using which everyone found highly informative, enjoyable and useful. One of the patient reps then sat in on the focus group, which was seen to draw out a deeper understanding of patients real concerns.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The qualitative researchers are still qualitative researchers giving that professional viewpoint. The patient partner is still giving the patient perspective and able to identify a phrase or attitude that reveals a truth. By working together they each add value.</span></div>
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<span style="text-decoration: underline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Words have Different Meaning</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">I have heard and read much about the attitudes of people affected by cancer to the word ‘battle’ being used in articles and conversations with patients. It seems sensible therefore to avoid using a word in a leaflet that might upset or even offend someone but how will we know without having those conversations.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">You may also have noticed that I just used the phrase ‘people affected by cancer’ rather than patients. I use it because it is more inclusive of relatives, friends and colleagues. I was a cancer patient almost quarter of a century ago - I am not now. It is these subtle changes that sit within all health domains, are prevalent across all professions and exist in all relationships.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Involving patients and the public is that opportunity for a reality check. It is on the grounding in real life understanding. It is the application of common sense. Paul Workman, from the Institute for Cancer Research <a href="https://www.blogger.com/Paul%20Workman%20on%20language%20https://www.icr.ac.uk/blogs/the-drug-discoverer/page-details/winning-the-war-on-cancer-why-words-matter?utm_content=bufferb82a2&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer">wrote about this recently</a>.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A Summary</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Qualitative research is rightly about standing back, observing, gathering and analysing the evidence to offer comment. Patient Involvement is more about stepping forward to speak up from a personal perspective. Meeting each other and working together for mutual understanding and making research personal. It is about mutual gain from a relationship.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">Qualitative Research is clearly about ‘evidence’ whilst Patient Involvement may be more about the ‘individual’ but each brings and provides knowledge. It seems to me that it is as incumbent on patient advocates to know about qualitative research as it so often relies on their experiences and provides backing for our discussions. It is a chance to learn about the different methodologies that are used from questionnaires and surveys to narrative analysis.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">We can understand why people take part in but it was many patients who asked for a <a href="https://www.nihr.ac.uk/patients-and-public/why-join-in/patient-research-experience.htm">Patient Research Experience Survey</a> about what taking part is actually like. We will want and need qualitative research to review, analyse and give evidence about the types of questions, the responses achieved. But sometimes it is about the poster on the wall, a mis-worded phrase that lacks the personal sensitivity and empathy</span><span lang="en-GB">.</span></span></div>
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<span style="text-decoration: underline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">And finally</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs5Zjarh633FFlA7o3MhJWG6mB2HoI0EVDcb0YFMVRbTkxgltEjX2lGN7xmc2O9oCFLGIhceTE_06cih5KrMimTA2XZiMDiFEcw6q0V1e5RX5Eu5t3INF_z8J1qwNve60PnByThZATDwU/s1600/Arse.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="638" data-original-width="1056" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs5Zjarh633FFlA7o3MhJWG6mB2HoI0EVDcb0YFMVRbTkxgltEjX2lGN7xmc2O9oCFLGIhceTE_06cih5KrMimTA2XZiMDiFEcw6q0V1e5RX5Eu5t3INF_z8J1qwNve60PnByThZATDwU/s320/Arse.png" width="320" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">A person may choose to buy and wear clothes to make them feel that they are reasonably keeping up with fashion but the views of their close family and friends can give opinions that are both immediately practical and apposite. They may be kind or maybe difficult to hear yet they stop us looking ridiculous. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There is a part of Patient/Public Involvement that can say the Emperor has no clothes when those working in research may be more conscious about their careers.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: x-small;">There was a wonderful quote on Twitter recently that Involving Patients and the Public "might reduce the chance of the researcher making an arse of themselves". </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: x-small;">If that is correct, then I wonder then if Qualitative Research may be more about saying what type of knickers we prefer to wear. But is it Patient Involvement that can really say which knickers are the most comfortable?</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US" style="font-style: italic; font-weight: bold;">PLEASE </span><span lang="en-US" style="font-style: italic;">READ </span><span lang="en-GB" style="font-style: italic; font-weight: bold;"><a href="https://kristinastaley.com/2019/02/25/how-is-involvement-in-research-different-from-qualitative-research/">Kristina's Blog</a> </span><span lang="en-US"><span style="font-size: xx-small;"><i>where we are trying to set out our thinking in a chart<b>. </b></i></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US"><span style="font-size: large;"><i><b>Please </b>use <b>#QualitativeandPPI </b>when responding on Twitter</i></span></span></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-79325798608768103162018-12-03T07:15:00.002+00:002019-07-08T12:29:54.099+01:00Health Care Data - Improving Lives through Research<div style="font-size: 11pt; margin: 0in;">
<a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Health Care Data - Improving Lives through Research</b> Follow #healthdataconf18 on Twitter</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US" style="font-style: italic;">This article follows on from a post I wrote a few months ago: The word DATA makes it sound a lot like numbers! It can be found on the National Institute for Health Research (NIHR) website</span><span lang="en-GB" style="font-style: italic;"> </span><span lang="en-GB" style="font-style: italic;"><a href="https://www.nihr.ac.uk/blogs/data-the-word-makes-it-sound-like-a-lot-of-numbers/8627">here</a>. I find it helpful to record my thoughts as I get more involved in this part of research,</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>A PATIENT PANEL with DIFFERENCE </b><a href="https://healthdataresearch.blog/2018/12/04/a-week-of-public-engagement-an-industry-showcaseand-high-performance-computing/">(See post by Prof Andrew Morris, Director of HDR UK)</a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have been a member of numerous 'Patient Panels' at Conferences over many years. These Panels are most often at the end of the day or just before lunch. Attendees sometimes seem more intent to get home or are very hungry.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Today, at the Health and Care Data: Improving Lives Through Research conference, we are on <b>FIRST</b>. It is a positive reminder that this is about improving people's lives. It is about setting a tone of partnership. It is about imagining how data can be used to make a difference. It is a lesson for other conferences.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">The event in Leeds on 3rd Dec was organised by </span><a href="https://www.hdruk.ac.uk/"><span lang="en-GB">Health Data Research U</span></a><span lang="en-US">K, the </span><span lang="en-GB"><a href="https://www.nihr.ac.uk/">National Institute for Health Research</a> </span><span lang="en-US">and </span><a href="https://digital.nhs.uk/"><span lang="en-GB">NHS Digital</span></a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">The Panel consists of Molly Watt, </span><span lang="en-GB"><a href="http://www.mollywatt.com/">Usability and Accessibility Consultant</a>, </span><span lang="en-US">Richard Stephens, Chair of the </span><span lang="en-GB"><a href="https://www.ncri.org.uk/patient-and-public-involvement/">Cancer Consumer Forum</a> a</span><span lang="en-US">nd myself. It is chaired by </span><a href="https://simondenegri.com/"><span lang="en-GB">Simon Denegri</span></a><span lang="en-US">, OBE, National Director for Patients.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Here are some of issues I think about when considering data...</i></span></div>
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<span style="font-weight: bold;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Think PERSON before HEALTH DATA</span></span></div>
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<span style="font-weight: bold;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span><span style="font-weight: bold;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I want my health information to be used to help me live well. I would like to think that data on me could help others. I hope that I will be informed about research studies I might wish to join. I want to know the results of any studies I join. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I hope that all of those working with health data remember it is not just information on a spreadsheet - there is a person, their close family and friends as well as those who might just point at them in the street. It could easily be a relative of yours.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It is why involving patients, for example in this Panel, is so important. Getting the perspective of patients and members of the public helps affirm our actions or even challenge our accepted thinking. It can provide an assurance to our work and help unpick some of the moral dilemmas.</span></div>
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<span style="font-weight: bold;"><span style="font-family: "arial" , "helvetica" , sans-serif;">HEALTH DATA INFORMATION deserves RESPECT</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: 11pt;">Many years ago when I was handling information about a young person excluded from schools, I </span></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.666666984558105px;">composed it a manner that that protected the individual and them </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">usually hand delivered the </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.666666984558105px;">letter</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">. It was a highly </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.666666984558105px;">considered act because of the numerous stages - nowadays it is too easy to just press send without consideration of the consequences.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We need to remind all staff working with data of the importance of being respectful. The speed with which information can be shared has positive or negative repercussions.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My two rules of thumb are: ‘Would I post private information on my front door?’ and ‘How might a tabloid newspaper view and report this information?’</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This all comes down to a matter of trust and why we need Patient and Public Involvement for our decision making. It helps to think through the possible responses and reactions for research and possibly to avoid breaches. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Use HEALTH DATA - INTELLIGENTLY</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I often feel that there is a risk that data gets collected because it is possible rather than needed. It seems more important to think about what aspects of people's lives need/want improvement and ask what we might gain from the data. Equally, asking data experts how we might gather and use it effectively is a key feature of modern working in research. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We can apply the following comment by Professor Stephen Evans, the medical statistician, to heal</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">th data research "It is better to measure imprecisely that which is relevant that measure precisely that which is irrelevant" (BMJ Reference below)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Again, it is by engaging the public and offering further opportunities to get actively involved in meaningful dialogue that helps identify the most valuable information.</span></div>
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<span style="font-weight: bold;"><span style="font-family: "arial" , "helvetica" , sans-serif;">ENGAGE to INVOLVE</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">By engaging the public you show how you have been working together, how you have sought to be inclusive and you can demonstrate the impact that these discussions have upon the research. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Involvement can illustrate how patient experience, insight and knowledge have helped shape your thinking, behaviours and actions. It ensures what you are doing is relevant, suitable and appropriate.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><u>Some</u> <u>further</u> <u>notes</u>...</span><br />
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<span style="color: #0b5394; font-family: "arial" , "helvetica" , sans-serif;"><b>Health Data Research UK has a Public Advisory Board </b></span><span style="font-size: 11pt;">https://www.hdruk.ac.uk/about/people/public-advisory-board/</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The Population Health Research Network in Australia has a policy to actively involve pateit=nts and public <a href="https://www.phrn.org.au/for-the-community/consumer-and-community-participation-policy/">https://www.phrn.org.au/for-the-community/consumer-and-community-participation-policy/</a>and includes learning and development opportunities <a href="https://www.phrn.org.au/for-the-community/consumer-engagement-training/">https://www.phrn.org.au/for-the-community/consumer-engagement-training/</a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">BMJ 20th May 1995 Vol 310 Pages 1315-1318 What do I want from health research and researchers when I am a patient?</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-17539821254682777102018-11-28T10:20:00.000+00:002019-03-09T11:31:39.519+00:00Developing a Research Culture<i><span style="font-family: "arial" , "helvetica" , sans-serif;">Many thanks to Worcestershire Acute Hospitals, Wye Valley and Worcestershire Health & Care NHS Trusts for inviting me to give a talk at their <b>Developing a Research Culture</b> conference. </span></i><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What does being Research Active mean? (You can read</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> my other blog post on this on the BMJ website which can be accessed </span><a href="https://blogs.bmj.com/bmj/2018/09/13/derek-c-stewart-what-does-being-research-active-mean-for-clinicians-and-their-patients/" style="font-family: arial, helvetica, sans-serif;">here</a><span style="font-family: "arial" , "helvetica" , sans-serif;">?)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I believe that a Research Culture can be identified by a common desire to provide and receive the best treatments and care. It is about us being open with each other about what is known and what is not known. It is about creating a partnership with our communities that helps us ask the relevant, suitable and most appropriate questions. It is about clinical practice and the services we provide being an agreement with patients and their families - </span><span style="font-family: "arial" , "helvetica" , sans-serif;">a mutual learning environment. See the </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Kings Fund report – <a href="https://www.kingsfund.org.uk/publications/shared-responsibility-health">Shared Responsibility for Health</a>.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: 14.666666984558105px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small; font-weight: normal;">It is about research being integrated into the normal and everyday part of the patient pathway but how will we know?</span></span></span></h3>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: 14.666666984558105px;">H</span>ow might we all see, hear and touch a Research Active Culture? </span></h3>
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<i><span style="font-family: "verdana" , sans-serif;">This is my Top Ten (Well, actually just 9 as I am keen to know what you think should be added at number 10)</span></i><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Signage in Liverpool</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">1. <b>RESEARCH GETS A MENTION</b>…in letters, outpatient appointments, consultations, on noticeboards and through different media and language. </span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">2. <b>WHY WE DO RESEARCH</b>…explains the ambition and value of providing the best evidenced based care and treatment for patients. e.g. that high quality research is a means of making sure our patients receive the best care; that research drives the work we do; that we retain and attract the best staff. Join #WhyWEDoResearch on Twitter for a conversation.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">A Business Card from Nottingham</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">3. <b>ASK ABOUT RESEARCH</b>…becomes a norm People are prompted to ask if there are any research studies that would suit - link to a list of active studies. Staff are encouraged to apply for NIHR Fellowships. And providing staff including reception and the Board with the appropriate responses including the important use of Patient Data.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">4. <b>EVIDENCE IS APPARENT</b>…on display boards about the types of research that has taken place over the years (Selected by a patient panel).</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">A Research Day in Birmingham</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">5. <b>STORIES ARE TOLD</b>…in Monthly bulletins about patients taking part, the research nurse, researchers work, lab and tissue work, leader board. </span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">6. <b>LOCAL PEOPLE INVOLVED</b>...and encouraged to help inform, shape and influence the research by identifying priorities. Patient Involvement is inclusive and reaches out into the community including support groups. </span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">7. <b>THINK DIGITAL</b> ...in the way technology is used to improve the research experience. Research on Trust Home Page - One click to a page celebrating practice, the stories, the policies, performance and media coverage. </span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">I Am Research Campaign</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">8. <b>PARTNERS ARE ENGAGED</b> Examples of local and national work with local council, charities are included in annual reporting.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">9. <b>HOW WE CAN ALL HELP.</b>..is made clear on signs and display as to how people can get involved, take part and donate, money, blood, tissue and data. Use small business cards, postcards, leaflets and completing the <a href="https://www.nihr.ac.uk/patients-and-public/why-join-in/patient-research-experience.htm">Patient Research Experience Survey (PRES)</a></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">10. <b>What would YOU add to the list?????</b></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><b>Community Involvement</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">To ensure we get these right it is vital to actively involve our local population. It ensures that the research and the culture is…</span></div>
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<span lang="EN-US"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">This involvement provides the opportunities to tap into PATIENT EXPERIENCE and INSIGHT, KNOWLEDGE and SKILLS. Equally we, as patients, get to understand more about our health and the challenges faced by the NHS.<o:p></o:p></span></span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">YOU can, of course, also suggest...</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A<b> QUESTION</b> for NHS Research <a href="https://www.nihr.ac.uk/research-and-impact/research/suggest-an-idea-for-research/">https://www.nihr.ac.uk/research-and-impact/research/suggest-an-idea-for-research/</a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A<b> TOPIC </b>for Scientific Enquiry (Closes 29th Nov 2018) by the All Party Science & Technology Committee https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/inquiries/parliament-2017/my-science-inquiry-17-19/</span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-7997812166653669232018-10-17T22:13:00.005+01:002018-10-19T10:30:55.824+01:00Patient Advisory Groups (Part 4) DEVELOPING PEOPLE <div style="color: #454545; margin: 0in;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Developing People</b> <span style="font-size: x-small;"><a href="https://sites.google.com/nihr.ac.uk/pi-standards/standards/Support-and-Learning?authuser=0">(Patient/Public Involvement Standard: Support and Learning)</a></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">- Being a member of a Patient Advisory Group may help research yet it is also an opportunity for learning and developing as a person - patients and researchers.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>This is </i><b>Part 4</b> <i>in <b>a series of articles</b> about <b>Patient Advisory Groups</b>. You can read the other posts in the series by clicking on these links: </i><a href="https://derek-online.blogspot.com/2018/03/patient-advisory-groups.html"><b>Patient Advisory Groups (PAG) Part 1</b></a>; <a href="https://derek-online.blogspot.com/2018/04/patient-advisory-groups-part-2-from.html"><b>From Story to Reflection - Part 2</b> </a>; <a href="https://derek-online.blogspot.com/2018/05/patient-advisory-groups-part-3-purpose.html"><b>Purpose and Plans - Part 3</b></a>. <i>The final article will look at how we record and report on the activity of a Patient Advisory Group: A Tale to Tell.</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have been a member of many Patient Advisory Groups. I am always amazed by people's willingness to give of their time to help improve research. I learn so much from listening to other's experiences, knowledge and skills whether as patients or researchers. I am even more pleased to see people grow and develop as individuals. This article, <a href="https://powerfulpatients.org/2018/05/22/what-does-it-mean-to-be-an-empowered-patient/">Empowered Patients</a>, by <a href="https://twitter.com/JBBC">Marie Ennis-O'Connor</a> may be particularly helpful.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So far, in this series, I have spoken about making a difference to the research yet through our involvement experiences we invariably develop as people. We obtain new knowledge, gain different understanding and even develop new skills.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">We have the opportunity to obtain information relating to our own health, the current thinking about treatments, the latest research. For starters, we discover more about the way researchers work, the methods they use and the challenges they face.</span><span lang="en-GB"> We find out more about science, medicines and the human body. We discover more about health reasons that brought us to the table.</span></span></div>
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<u><span style="font-family: "arial" , "helvetica" , sans-serif;">Making Sense </span></u><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Members of Patient Advisory Groups might like to think about how we make sense of all the information we are being asked to consider. I have found it helpful to reflect by grouping the issues into different categories: </span></div>
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<li>Our <b>Condition</b> or illness - e.g. the causes, diagnosis, treatments, etc. </li>
<li>Current <b>Research</b> - e.g. the type, methods, approach, regulation, etc.</li>
<li>The <b>Science</b> - e.g. the pathology, laboratory, genetics, medicines, etc.</li>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This makes me think about the question or observation I might like to make in the meeting. You can choose your own categories to meet your needs.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There is NO necessity to formally learn these subjects. We pick up what we need in the same way we learn a few phrases on a visit to another country. Our presence in research land is to bring the patient voice to the table whilst reflecting on our experiences. It is, however, good a have a grasp about some of the issues, to raise our awareness and to gain knowledge. These help make our contributions more appropriate.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have a much better understanding now of the complexity of getting research done and the complications around applying the findings in practice. I know of the developments of more targeted treatments and the greater precision these are intending to provide.</span></div>
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<u><span style="font-family: "arial" , "helvetica" , sans-serif;">Personal Development</span></u><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There is a further area that is about how all of this affects us on a personal level:</span></div>
<span style="color: #454545; font-family: "arial" , "helvetica" , sans-serif;"><span style="caret-color: rgb(69, 69, 69);"><br /></span></span><span style="color: #454545; font-family: "arial" , "helvetica" , sans-serif;"> 4. Our </span><b style="color: #454545; font-family: arial, helvetica, sans-serif;">Self </b><span style="color: #454545; font-family: "arial" , "helvetica" , sans-serif;">- e.g. wellbeing, developing and coping </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span lang="en-US">I understand much more about my own wellbeing. I take much greater care about what I eat and keeping myself healthy. A health tracker has become a useful wearable addition to my life. As a consequence I have made fewer visits to my GP and take little or no medicine.</span><span lang="en-GB"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">All of this learning does not take place in the normal places of education. It takes place in the classroom of our experience and affects our feelings and emotions. I never imagined that I would become actively involved with clinicians and researchers - science was one of my weakest subjects at school. I therefore surprise myself at being so interested.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Just as we have the emotional ups and downs in reaction to our illness, so these responses are revisited when we attend meetings. These are elements of ‘fight’ or ‘flight’ where we want to take on the world or run screaming from the area.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It is worth thinking about how you might cope when something is said or done that might upset you. Members of a Nottingham Breast Cancer Research Patient Advisory Group suggested:</span></div>
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<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Distraction activity - thinking of something else, doodling on the papers</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Counting to 10 and/or breathing slowly and deeply</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Thinking of worse/ best scenarios and usually finding yourself in middle</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Think through possible scenarios beforehand - what happens if and thinking of decision</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Getting up and leaving the room for a few minutes</span></li>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In reality, these moments are extremely rare in Advisory Group setting but they do occur. They are perfectly normal</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The important fact is these moments reconnect us to our patient experience and remind us to think of those who might be asked to take part in a research study in question.</span></div>
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<u><span style="font-family: "arial" , "helvetica" , sans-serif;">Learning by Experience</span></u><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The learning itself takes place in a haphazard fashion depending on the people we meet. It is not a linear course of instruction. It is referred to as experiential learning and<a href="https://www.simplypsychology.org/learning-kolb.html"> David Kolb</a>, the educationalist describes this as the difference between visiting a place rather than merely reading about it.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As an example, having attended a meeting of the Nottingham group yesterday, I realised that some of the activity involves basic science and pre-clinical work including animal testing. Some of the examples from <a href="https://derek-online.blogspot.com/2018/10/useful-sources-of-information-about.html">last week's blog</a> might be of interest and use.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I learned more about breast cancer and the treatments <i>(condition)</i>, about the planned diagnostic tests <i>(research)</i> as well as how this is being targeted at specific cells <i>(science)</i>. I found out about <a href="https://www.youtube.com/watch?v=bUay9DV__G0">health economics</a><i> (research)</i>. I also felt supported by hearing from the members about their experiences <i>(self)</i>.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">These, in turn, invite us to consider the purpose of our involvement with research and how we record and report this activity. It is the subject of the next blog post - A Tale to Tell (PPI Standard: (Communication)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Note: If you are new to <a href="https://derek-online.blogspot.com/2016/11/is-this-what-we-should-all-know-for_25.html">Patient/Public Involvement in Research</a> then this post provides a lot of background sources of information</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-9206223111604708702018-10-12T10:38:00.000+01:002019-05-25T08:22:34.680+01:00#Involvement_Preclinical<b><span style="font-family: "arial"; font-size: 14pt;">I</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14pt;">nvolving Patient, Families and Public in Pre-clinical or Non-clinical Research - </span></b><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14pt;">Useful Sources of Information </span></b><br />
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<i>The idea of Patient and Public Involvement (PPI) in research is fairly clear when you consult with patients. It can be perceived as more challenging when the research is done at a distance yet it is far from impossible.</i></div>
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<i>Here are some articles, papers and websites that Bec Hanley and I found helpful in thinking about the issues around involving people in the laboratory, decontamination, animal and data research studies - ie pre-clinical or non-clinical research.</i></div>
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<i>These were initially prepared for a Workshop with those working and affected by Creutzfeldt-Jacob Disease (CJD) hosted by the National Institute for Health Research - Central Commissioning Facility, Policy Research Programme, (NIHR CCF PRP) in Twickenham. We are grateful for their support and to all those we interviewed and met on the day.</i></div>
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<i>A number of the references were sourced through a Twitter request using </i></div>
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<span style="text-decoration: underline;"><a href="https://twitter.com/search?q=%23Involvement_Preclinical&src=typd"><i>#Involvement_Preclinical </i></a></span><span style="color: black;"><i> so thanks to </i><a href="https://twitter.com/ERDorris"><i>@ERDorris</i></a><i> </i><a href="https://twitter.com/Katherine_JLA"><i>@Katherine_JLA</i></a><i> </i><a href="https://twitter.com/_nratcliffe"><i>@_nratcliffe</i></a><i> </i><a href="https://twitter.com/bellastarling"><i>@bellastarling</i></a><i> </i><a href="https://twitter.com/gailfdavies"><i>@gailfdavies</i></a><i> </i><a href="https://twitter.com/KristinaStaley2"><i>@KristinaStaley2 </i></a><i> </i><a href="https://twitter.com/JulieEBayley"><i>@JulieEBayley</i></a><i> and many others for retweets.</i></span></div>
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<span style="color: #b45f06; font-family: "arial" , "helvetica" , sans-serif;"><u><b>The SOURCES</b> are grouped into categories for ease of searching:</u></span><br />
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<b><span style="font-family: "arial"; font-size: 11pt;">Patient and Public Involvement – Pre-clinical<o:p></o:p></span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-family: "arial"; font-size: 11pt;"><a href="https://blogs.bmj.com/openscience/2018/06/05/can-patients-be-involved-in-preclinical-research/">Involving Patients in Pre-clinical Research</a> </span></b><span style="font-family: "arial"; font-size: 11pt;">This is a helpful article in the BMJ Open Science Blog by Katherine Cowan, </span><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;">an independent consultant and a Senior Adviser to the James Lind Alliance. </span></span><br />
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<span style="color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><a href="https://sciencetrends.com/bridging-the-gap-between-research-and-impact-public-and-patient-involvement-in-health-research/"><b>Bridging The Gap Between Research And Impact: Public And Patient Involvement In Health Research</b></a> Dr Emma Dorris makes the case for involving patients and the public as being about... Quality & Clarity, Needs and Value. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;"><a href="http://slginvolvement.org.uk/wp-content/uploads/2016/09/Lab-based-research-FINAL-10-8-16-public.pdf">Involving People in Laboratory Based Research</a> </span></b><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;">This is a useful discussion paper from the Shared Learning Group on Involvement (Research) which brings together many of those working in engagement and involvement in the charity sector. It includes a list of papers about PPI in lab-based research. <o:p></o:p></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-family: "arial"; font-size: 11pt;"><a href="https://www.biorxiv.org/content/early/2018/09/25/425371">Facilitating Patient and Public Involvement in basic and preclinical health research</a></span></b><span style="font-family: "arial"; font-size: 11pt;">. Paper by James Maccarthy, Suzanne Guerin, Anthony G Wilson, Emma Dorris<o:p></o:p></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial"; font-size: 11pt;"><a href="https://www.parkinsons.org.uk/sites/default/files/2018-09/2018%20PPI%20Resource%20for%20Researchers%20%28PDF%201462KB%29.pdf" style="font-weight: bold;">Involving Patients in Parkinson’s UK research</a><b> </b><a href="https://www.parkinsons.org.uk/sites/default/files/2018-11/PPI%20Guidance%20for%20Researchers.pdf" style="font-weight: bold;">UPDATED GUIDANCE</a><b> </b>along with other </span><span style="font-family: "arial"; font-size: 11pt;">excellent <a href="https://www.parkinsons.org.uk/research/patient-and-public-involvement-ppi">resources and information</a> from lab based researchers. Good <a href="https://www.youtube.com/watch?v=KTxQKngFlbs&feature=youtu.be">You Tube video</a> as well.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><a href="http://journals.sagepub.com/toc/dema/current" style="font-family: arial, helvetica, sans-serif;">Involvement in Dementia Research</a><span style="caret-color: rgb(51, 51, 51); color: #333333; font-family: "arial" , "helvetica" , sans-serif;"> -</span></b><span style="caret-color: rgb(51, 51, 51); color: #333333; font-family: "arial" , "helvetica" , sans-serif; font-size: small;"> Excellent series of articles and a paper by James Pickett and Matt Murray</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0122-2"><b>Diversifying audiences and producers of public involvement in scientific research: the AudioLab</b></a> - Great example from Bella Starling and Jemma Tanswell about how we might reach out and merge engagement with involvement</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;"><a href="https://harveysgang.blogspot.com/?m=1" style="font-weight: bold;">Involving Children and Young People</a> - Harvey's Gang is a great example of helping young people to understand what happens elsewhere in a hospital eg with blood tests </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-family: "arial"; font-size: 11pt;">Autistica UK </span></b><span style="font-family: "arial"; font-size: 11pt;">has developed<a href="https://www.autistica.org.uk/our-research/discover-network"> a research strategy with the whole community</a> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-family: "arial"; font-size: 11pt;">PPI Strategy for NIHR Health Protection Research Units - </span></b><span style="font-family: "arial"; font-size: 11pt;">The Health Care Associated Infections (HCAI) and Antimicrobial Resistance (AMR) at Imperial have produced <a href="https://www.imperial.ac.uk/media/imperial-college/medicine/nihr-hpru-hai-antimicrobial-resistance/HPRU-HCAI-and-AMR-patient-and-public-engagement-strategy.pdf">a Strategy for Involvement & Engagement</a></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;"><a href="https://www.involvingpeopleinresearch.org.au/"><b>Involving People in Research</b></a> - This Australian website has some good examples of involvement in <a href="https://www.involvingpeopleinresearch.org.au/images/docs/program_report230215.pdf">health data</a> - patient/family involvement is described here as 'consumer'</span><br />
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<span style="font-family: "arial"; font-size: 11pt;">For more general information, please go to <b><a href="http://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf">NIHR Involve </a></b></span><span style="font-family: "arial"; font-size: 11pt;"><a href="http://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf">Briefing Notes for Researchers</a></span></span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;"><a href="https://www.ncbi.nlm.nih.gov/m/pubmed/27256456/">Transparency and Public Involvement in Animal Research</a> </span></b><span style="font-family: "arial"; font-size: 11pt;">Paper on how patient involvement might increase openness </span></div>
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<b><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;"><a href="https://www.animalresearchnexus.org/">The Animal Research Nexus</a> </span></b><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;"></span><span style="font-family: "arial"; font-size: 11pt;">This network provides information about understanding about animal research. They have recently produced an<a href="https://animalresearchnexus.org/blogs/animal-research-conversation"> excellent set of resources including You Tube clips</a></span></div>
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<span style="font-family: "arial"; font-size: 11pt;"><b>Patients in Research </b>(in general)<b><o:p></o:p></b></span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;"><a href="https://www.bmj.com/content/361/bmj.k1463">Clarifying the roles of patients in research</a> </span></b><span style="font-family: "arial"; font-size: 11pt;">A BMJ Editorial on meaningful patient partnerships in research<b><o:p></o:p></b></span></div>
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<span style="font-family: "arial"; font-size: 12pt;"><b><a href="http://www.europeanlung.org/assets/files/publications/ubiobookletpip.pdf">Innovative Medicines Initiative</a> </b>-<b> </b></span><span style="font-family: "arial"; font-size: 11pt;">A guide to Involvement in EU funded research<o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;">Public Engagement <o:p></o:p></span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><a href="https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0119-x">Meet the Researchers</a> </b>- A simple yet effective means of making 'engagement' work for researchers and public Thanks <a href="https://twitter.com/jonathanboote">@jonathanboote</a></span></div>
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<b><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;"><a href="http://ingentaconnect.com/search/article?option1=tka&value1=the+public+engaged+scientists&pageSize=10&index=2#expand/collapse">The public-engaged scientists: Motivations, enablers and barriers</a></span></b><span lang="EN-US" style="font-family: "arial"; font-size: 11pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 11pt;">Paper by:</span><span class="apple-converted-space"><b><span style="font-family: "arial"; font-size: 11pt;"> </span></b></span><a href="http://ingentaconnect.com/search;jsessionid=a0c0p6p9le2is.x-ic-live-02?option2=author&value2=Cerrato,+Simona" style="color: purple;" title="Search for articles by this author"><span style="font-family: "arial"; font-size: 11pt;">Cerrato, Simona</span></a><span style="background-color: white; font-family: "arial"; font-size: 11pt;">; </span><a href="http://ingentaconnect.com/search;jsessionid=a0c0p6p9le2is.x-ic-live-02?option2=author&value2=Daelli,+Valentina" style="color: purple;" title="Search for articles by this author"><span style="font-family: "arial"; font-size: 11pt;">Daelli, Valentina</span></a><span style="background-color: white; font-family: "arial"; font-size: 11pt;">; </span><a href="http://ingentaconnect.com/search;jsessionid=a0c0p6p9le2is.x-ic-live-02?option2=author&value2=Pertot,+Helena" style="color: purple;" title="Search for articles by this author"><span style="font-family: "arial"; font-size: 11pt;">Pertot, Helena</span></a><span style="background-color: white; font-family: "arial"; font-size: 11pt;">; </span><a href="http://ingentaconnect.com/search;jsessionid=a0c0p6p9le2is.x-ic-live-02?option2=author&value2=Puccioni,+Olga" style="color: purple;" title="Search for articles by this author"><span style="font-family: "arial"; font-size: 11pt;">Puccioni, Olga</span></a><span style="font-family: "arial"; font-size: 11pt;"><o:p></o:p></span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;"><a href="https://www.involve.org.uk/sites/default/files/field/attachemnt/120727RCUKResource.pdf">Doing Public Dialogue </a></span></b><span style="font-family: "arial"; font-size: 11pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 11pt;">The Research Councils UK worked with Involve who specialise in public engagement </span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;">Patient Advocates</span></b><span style="font-family: "arial"; font-size: 11pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 11pt;">In America, the <a href="https://cjdfoundation.org/advocacy">CJD Foundation has created CJD Advocates</a> </span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;">Sense About Science <o:p></o:p></span></b></div>
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<span style="font-family: "arial"; font-size: 11pt;">A <a href="http://senseaboutscience.org/wp-content/uploads/2017/11/Public-engagement-a-practical-guide.pdf">Public Engagement Guide</a> that includes information on actively involving people<o:p></o:p></span></div>
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<span style="font-family: "arial";"><span style="caret-color: rgb(0, 0, 255); font-size: 14.666666984558105px;"><i>The 2 major supports in Public Engagement are </i></span></span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;"><a href="http://www.publicengagement.ac.uk/about-engagement/public-engagement-and-ref">National Coordinating Centre for Public Engagement</a> </span></b><span style="font-family: "arial"; font-size: 11pt;">– good source of information<o:p></o:p></span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;">The Wellcome Trust</span></b><span style="font-family: "arial"; font-size: 11pt;">– produced <a href="https://wellcome.ac.uk/news/wellcomes-approach-engaging-public-going-change">a new strategy for engagement</a><o:p></o:p></span></div>
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<b><span style="font-family: "arial"; font-size: 11pt;">Industry<o:p></o:p></span></b></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">Patient Engagement and Involvement in Research and Development<o:p></o:p></span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">An <a href="https://www.pfizer.com/files/about/Position-Patient-Engagement-in-Research-and-Development.pdf">article by Pfizer</a> on the new opportunities for patient engagement<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;">Improving Patient Involvement in the Drug Development Process <o:p></o:p></span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 11pt;"><a href="https://www.clinicaltherapeutics.com/article/S0149-2918(17)31004-4/fulltext">Article on value of social media</a> to engage patients <o:p></o:p></span><br />
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<b>Article in Pharma Phorum</b> <a href="https://pharmaphorum.com/?p=53404" style="color: #e4af0a;">https://pharmaphorum.com/?p=53404</a></div>
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<span style="letter-spacing: 0.05em; text-transform: capitalize;"><b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Engaging Patients In Clinical Trials with Alan Thomas & Juliet Moritz</span></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;">Excellent <a href="https://premier-research.com/perspectives-premier-voices-8-patient-engagement/">podcast</a> about why the patient voice is important in trial development</span><br />
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<b><span style="font-family: "arial"; font-size: 11pt;">Impact<o:p></o:p></span></b></div>
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<b><span style="font-family: "arial"; font-size: 11pt;">Research Impact</span></b><span style="font-family: "arial"; font-size: 11pt;">- Interesting and valuable <a href="https://www.emeraldpublishing.com/resources/" style="color: purple;">resources from Dr Julie Bayley</a>(</span><a href="https://juliebayley.blog/" style="color: purple;"><span style="font-family: "arial"; font-size: 11pt;">https://juliebayley.blog</span></a><span style="font-family: "arial"; font-size: 11pt;">)<b><o:p></o:p></b></span><br />
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<span style="font-family: "arial"; font-size: 11pt;"><a href="http://https___www.thinknpc.org_wp-content_uploads_2018_10_make-it-count-why-impact-matters-in-user-involvement-1.pdf/">Why Impact matters in User Involvement</a> - Excellent resource from <a href="https://www.thinknpc.org/">NPC</a></span></div>
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<span style="font-family: "arial"; font-size: 11pt;">Information about the <a href="https://www.nihr.ac.uk/news-and-events/documents/Public_Involvement_Standards_March%202018_WEB.pdf" style="font-weight: bold;">PPI Standards </a><b><o:p></o:p></b></span></div>
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<span style="font-family: "arial"; font-size: 11pt;"><b>….AND MORE </b>(I</span><span style="font-family: "arial"; font-size: 11pt;"> will continue to add and then categorise later)<b><o:p></o:p></b></span></div>
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<span style="font-family: "arial"; font-size: 11pt;">From Canada </span><span lang="EN-US" style="color: #353535; font-family: "applesystemuifont";"><a href="https://twitter.com/CAR_PSP" style="color: purple;">@CAR_PSP</a> via twitter on <a href="https://research-survey.nshealth.ca/surveys/?s=ELIg6TqAar" style="color: purple;">Involvement in Anesthesia Research</a></span><b><span style="font-family: "arial"; font-size: 11pt;"><o:p></o:p></span></b><br />
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<b><span lang="EN-US" style="color: #353535; font-family: "arial";">Count Me In </span></b><span lang="EN-US" style="color: #353535; font-family: "arial";">- A great example of how patients can help with encouraging PARTICIPATION in a Study using <a href="https://vimeo.com/203194124" style="color: purple;">a Vimeo clip</a>Thanks </span><span style="font-family: "times new roman"; font-size: 10pt;"><a href="https://twitter.com/MBCNbuzz" style="color: purple;"><span style="color: #657786; font-family: "helvetica neue"; text-decoration: none;">@MBCNbuzz</span></a><span style="font-size: x-small;"><o:p></o:p></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.blogger.com/Evidence%20Synthesis%20https://twitter.com/cochraneuk/status/1052145158094036993?s=21">Involvement in Evidence Synthesis</a> - Wonderful example of how involving patients, families and public can make a difference in complex and complicated areas of research. Thanks <a href="https://twitter.com/CochraneUK">@CochraneUK</a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Arthritis Research Conference in Ireland which included science, treatments and care with patients attending https://www.ucd.ie/conway/engagement/newsopinion/2018/togetherisbettertransformingarthritisresearchinireland/</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-64470894623706569002018-09-15T11:57:00.000+01:002019-07-08T12:42:47.525+01:00Blog Posts in other places<span style="font-family: "arial" , "helvetica" , sans-serif;">I have been relatively quiet on my own blog recently but that doesn't mean I have been silent. I have just been posting stuff elsewhere...</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What does the phrase 'Research Active' mean to you?</u></b></span></h2>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This post is on the BMJ website and can be accessed <a href="https://blogs.bmj.com/bmj/2018/09/13/derek-c-stewart-what-does-being-research-active-mean-for-clinicians-and-their-patients/">here</a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Join us on Sept 18th 2018 for a Tweetchat at 2000hrs (BST) on this topic.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>The word DATA makes it sound a lot like numbers!</u></b></span></h2>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This post can be found on the NIHR website <a href="https://www.nihr.ac.uk/blogs/data-the-word-makes-it-sound-like-a-lot-of-numbers/8627">here</a></span><br />
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<a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://www.blogger.com/blogger.g?blogID=8524106636821164167" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="about:invalid#zClosurez" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="font-family: "arial" , "helvetica" , sans-serif;"><u>Patients and Research - Together</u></span></h2>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">This article was for the Clinical & Contract Research Association Yearbook which was launched at the House of Lords in July 2018. My article is </span><a data-saferedirecturl="https://www.google.com/url?q=https://www.ccra.org.uk/yearbooks/2018/ebook.html%23p%3D20&source=gmail&ust=1540111629417000&usg=AFQjCNHhR93FMT83gaCiYntnztAmSTg1YA" href="https://www.ccra.org.uk/yearbooks/2018/ebook.html#p=20" style="color: #1155cc;" target="_blank">here</a><span style="background-color: white;">. </span></span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-85881091664871195362018-07-10T11:43:00.001+01:002018-09-15T11:50:47.948+01:00Why do we, as patients, have to prove our worth?<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: arial, helvetica, sans-serif;">Evidence of IMPACT is increasingly being mentioned when we talk about patient and public involvement.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But, why do we have to prove our worth? Why should we have to gather evidence to show the difference we have made? We don't expect the clinician, the statistician, the methodologist, the data manager to prove their worth in the research process. We don’t say - why are you here?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">One of the first things most researchers do…is a literature review. They naturally want to find out what is known already. They often start with what is published in Peer Reviewed Journals. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">If there is NO mention of how patients and the public have been involved then in the reality of research there is NO Patient & Public Involvement. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I exaggerate, but there is an element of truth that if there is no evidence then how do we know. The others, I mentioned have over years shown their value. We must do the same.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>We make a real and tangible difference...</b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><u>To Individual research studies</u></span><br />
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Enriching the reality of the research - the priorities, relevance, and value</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Informing the design of the study - outcome measures, inclusion measures, Patient Information Leaflets</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Improving the doing of the study - advice on where to promote and recruit, membership of trial management and even co-applicants</span></li>
</ul>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><u>By talking about Research</u></span><br />
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Raising awareness about research in general through the Research Ambassadors initiative</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Increasing access and provosinh more information about research </span></li>
</ul>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><u>For Patients, Public and Healthcare Organisations</u></span><br />
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">By being Active in these changes</span></li>
</ul>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It is more than just making improvements to the research and doing studies.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It is about research under-pining and being a part of the normal patient pathway. My own story bears witness that the knowledge of research, experience of treatments and the patient discussing the options are the important elements.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhto4zSG3jFKP0bMwp4mmU3djrMrJg7iwVvPlyM45yyE5w01nKPHpEREtUm1qfBc1rTBSuh83B_S9v75UKnemU8hnbpVJLQcbtunKbhIZx_V2Tdvow5ddI8tsazAvh2j5YDiG2A5P4a9zo/s1600/Q1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="538" data-original-width="486" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhto4zSG3jFKP0bMwp4mmU3djrMrJg7iwVvPlyM45yyE5w01nKPHpEREtUm1qfBc1rTBSuh83B_S9v75UKnemU8hnbpVJLQcbtunKbhIZx_V2Tdvow5ddI8tsazAvh2j5YDiG2A5P4a9zo/s320/Q1.jpg" width="289" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It is about making a difference to the individual study and the researcher, the broader aspects of access and recruitment as well as the general direction of intertwining high quality research as part of good clinical practice.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We are seeing the movement of research from academia, though clinical care to being a serious patient asset.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">We, as patients, should expect, seek and maybe sometimes demand more. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Our questions should be about the research, the evidence as well as being able to participate. Some of the KEY Questions are highlighted in the box. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Are we making a difference?</b></span><br />
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The following notes are based on a <a href="http://derek-online.blogspot.com/2018/07/what-might-impact-look-like.html">Workshop in Coventry</a> - Impact is not just about counting things. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">We need the evidence in story form, p</span><span style="font-family: "arial" , "helvetica" , sans-serif;">hotographs and videos about...</span><br />
<br />
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Before and after Patient Informational Leaflets - examples of the how language changes from medical to plain English, how the layout of a leaflet alters, the visual diagrams that have been added, maybe even the use of other media</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Simple personal diaries asking people's expectations of being involved at the beginning of a project then at some intervals</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Reporting of the why, what, how of the Involvement with illustrative instances of improvements</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Preparing a simple evaluation sheet with grades to note information, knowledge, experience, confidence</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Making a case study of a person or group's involvement</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Booklets on the Involvement - CRUK</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">Social media summary around a particular discussion </span></li>
</ul>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">We must also ensure that the story of the involvement is mentioned in dissemination, on posters and in publications. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Many of these changes are about the day to day PRACTICE yet we should also be looking at the shift in CULTURE (people's attitudes) and the CLIMATE (people's behaviours) </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">We must see the <a href="https://patientsincluded.org/">Patients Included</a> accreditation for every event.</span><br />
<br />
<div>
<br /></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-10029223596865013322018-07-08T19:16:00.000+01:002018-09-15T11:52:11.314+01:00What might IMPACT look like? <div lang="en-GB" style="font-family: calibri; margin: 0in;">
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<span style="font-weight: bold; text-decoration: underline;">What might IMPACT look like?</span></div>
<span style="font-size: x-small; font-weight: bold; text-decoration: underline;"><a href="http://derek-online.blogspot.com/2018/07/why-do-we-as-patients-have-to-prove-our.html">Please also check out this page as well</a></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC_MNI3es2bnY4FwmzM4vpYUjcD9vWiiRacP0-v2EZwiyAy1cH6SvOKfykPfz6iQtNszFQUNVw9xBmzutcTRNHIU3BKdBCyNwPUzYnRtx-bjMMc9Kewd2VNh6RT4jvVHjChyxSa2jBe_E/s1600/IMG_3059.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC_MNI3es2bnY4FwmzM4vpYUjcD9vWiiRacP0-v2EZwiyAy1cH6SvOKfykPfz6iQtNszFQUNVw9xBmzutcTRNHIU3BKdBCyNwPUzYnRtx-bjMMc9Kewd2VNh6RT4jvVHjChyxSa2jBe_E/s200/IMG_3059.jpg" width="150" /></a></div>
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">This is the question I posed at a workshop at </span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>C</b></span><b><span style="font-size: large;">oventry and Warwickshire University Hospitals Research and Development Summit 2018 </span></b><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;"><b>#rdsummit2018 @UHCW_RandD @nhsuhcw</b></span></div>
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The workshop was publicised as highly interactive and informative. Hopefully is was fun and safe learning with colleagues.</div>
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<span style="font-weight: bold;">DIFFERENCE</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfQTHpL7T0mBYmrLtOGKG0kr3Sct_3vJryUmL4HklFyNOWKg9quuivp79Q9CNbpSB6qoDXrgu0wuR1eFKf9WZM9ChLflrdOTZRjRN75kObRfoOvLXidsbof8_gz3GTS0Idca32Vi4gi_g/s1600/IMG_3058.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="320" data-original-width="240" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfQTHpL7T0mBYmrLtOGKG0kr3Sct_3vJryUmL4HklFyNOWKg9quuivp79Q9CNbpSB6qoDXrgu0wuR1eFKf9WZM9ChLflrdOTZRjRN75kObRfoOvLXidsbof8_gz3GTS0Idca32Vi4gi_g/s200/IMG_3058.jpg" width="150" /></a>Participants were invited to form small groups. Each group was given a card providing a separate scenario yet with the same question. Each card reflected different aspects of involvement: planning an open day, advising on patient info leaflets, commenting on outcome measures, membership of a trial management group.</div>
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The question was simple: <b>What difference might this make?</b></div>
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The responses varied from the principled to the practical. They speak about being more patient friendly and about making a real difference.</div>
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It is interesting how we have all become better at explaining the why, the what and even the how of actively involving the public in research as the responses below illustrate.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuOoPP2UuOr7qYGw3IWHsHqKuep7vnnNGi6QtwUg_ccwu1u4JGY8alawjF06QEEjaQvIyx9Xq5th1l7A3CC7xE1n8e5_71qX2RLcvLT1wyfQHOw09hyI09lBosimnJy-AQCQLzVbL3xtM/s1600/IMG_3063.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="320" data-original-width="240" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuOoPP2UuOr7qYGw3IWHsHqKuep7vnnNGi6QtwUg_ccwu1u4JGY8alawjF06QEEjaQvIyx9Xq5th1l7A3CC7xE1n8e5_71qX2RLcvLT1wyfQHOw09hyI09lBosimnJy-AQCQLzVbL3xtM/s200/IMG_3063.jpg" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg22YtVIfSAmDhYPmB-df789ZqQZ3T6fKlwF61rt71wL2Ks6wFPpBdJmUPFfziztdaJCxpLGlZgiEIVdikSluyh4TjG4mRipGdqVwPUv827maWEU5jfm-SqowGcLh0yEQgsvkWg0gN0O8Y/s1600/IMG_3067.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="240" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg22YtVIfSAmDhYPmB-df789ZqQZ3T6fKlwF61rt71wL2Ks6wFPpBdJmUPFfziztdaJCxpLGlZgiEIVdikSluyh4TjG4mRipGdqVwPUv827maWEU5jfm-SqowGcLh0yEQgsvkWg0gN0O8Y/s200/IMG_3067.jpg" width="150" /></a>The second task was about capturing the IMPACT. By some stroke of fortune, I had just attended the workshop led by <b><a href="https://twitter.com/JulieEBayley">@julieEbayley</a></b> and got this lovely quote: <b>“IMPACT is the provable benefits of research in the <span style="font-style: italic;">real world</span>”</b>.</div>
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The purpose of the second task was to invite the participants to think about what schools refer to as primary and secondary evidence! In other words how can we demonstrate the difference we have made.</div>
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The groups came up with some great examples of the difference involvement might make and the ways in which we might measure the impact.<br />
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<span style="font-weight: bold;">Involvement in Priority Setting</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGOy54t8voyQPRdq5XAs-cCN23fX8KLpWLWw1RXVwjDHIIDDMcC46cpTcT_v011vVzWP9ppPxBKS4Jicdb33vcs4ZKQTCGDS6qBnsSMPtt_Q4URlVxXsSu6kW615dbBiIEzgS7vG0IVG0/s1600/IMG_3077.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="264" data-original-width="320" height="165" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGOy54t8voyQPRdq5XAs-cCN23fX8KLpWLWw1RXVwjDHIIDDMcC46cpTcT_v011vVzWP9ppPxBKS4Jicdb33vcs4ZKQTCGDS6qBnsSMPtt_Q4URlVxXsSu6kW615dbBiIEzgS7vG0IVG0/s200/IMG_3077.jpg" width="200" /></a><br />
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The difference of involving patient/public in priority setting might be that the focus and direction of travel will change from academic priorities to public. By including patients we might increase public understanding and in turn gives us chance to inform people on benefits for patients.</div>
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Patient involvement needs to be done and to show a demonstrable difference.</div>
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<span style="font-style: italic;">The IMPACT might be measured by having…</span><br />
<span style="font-style: italic;"><br /></span></div>
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<span style="font-style: italic;">A summary of ideas offered by patients/public and how the priorities changed</span></div>
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<span style="font-style: italic;">An evaluation of how priorities have shifted over time from academic to public ownership</span></div>
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<span style="font-weight: bold;">Involvement about Patient Information Leaflets</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCvnj8YW9J3N6JwdYNO2AIa_aV6nc9MPtbpkrj0pL3Myrc_KufmpveKfO_8ch64rNJiWnGKmTupU9vgyssmkoef-RnWDiTLJWNvlan0-uuo_sfW-rL6TFA_FiXePB2XtEcM6RMf2CFkag/s1600/IMG_3082.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="261" data-original-width="320" height="163" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCvnj8YW9J3N6JwdYNO2AIa_aV6nc9MPtbpkrj0pL3Myrc_KufmpveKfO_8ch64rNJiWnGKmTupU9vgyssmkoef-RnWDiTLJWNvlan0-uuo_sfW-rL6TFA_FiXePB2XtEcM6RMf2CFkag/s200/IMG_3082.jpg" width="200" /></a>The difference of involving patient/public might be that our leaflets are more Patient Friendly. We might make less assumptions. It allows researchers to understand what the patient needs e.g. Is it acceptable to the patient?; Does it deliver the right information? The answers might help validate the research and help with answering questions at ethical review.</div>
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<span style="font-style: italic;">The IMPACT might be measured by showing…</span><br />
<span style="font-style: italic;"><br /></span></div>
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<span style="font-style: italic;">The before and after versions of the leaflet</span></div>
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<span style="font-style: italic;">Examples of where the medical jargon has been altered to make the language more relevant</span></div>
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<span style="font-weight: bold;">Involvement with Outcome Measures</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirwywTZDPB3hhCmJ5XfVVgw-x7QN8hclm949K1-5NazJQzd8fQWUSQRGXN4Z5RiBdTzwIZ5-WCP7dpBMW0hB-_QuR5UsAfxbsS8xE7nu1bNVNiC6bJxFwNd3DPqsK_ANsrzUeo5h4Cznk/s1600/IMG_3083.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="237" data-original-width="320" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirwywTZDPB3hhCmJ5XfVVgw-x7QN8hclm949K1-5NazJQzd8fQWUSQRGXN4Z5RiBdTzwIZ5-WCP7dpBMW0hB-_QuR5UsAfxbsS8xE7nu1bNVNiC6bJxFwNd3DPqsK_ANsrzUeo5h4Cznk/s200/IMG_3083.jpg" width="200" /></a>The difference of involving patient/public might be that the measures are more meaningful and have realistic expectations. It might help tackle patient opinions and perceptions on outcomes and increase transparency about the research. It can also help the researcher communicate about the trial in a more friendly manner. Equally, it challenges the researchers by having the patient present.</div>
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<span style="font-style: italic;">The IMPACT might be measured by having…</span><br />
<span style="font-style: italic;"><br /></span></div>
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<span style="font-style: italic;">A different focus of the actual measures (ie more meaningful, realistic, patient friendly)</span></div>
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<span style="font-style: italic;">Examples of the original measures compared with later version</span></div>
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<span style="font-weight: bold;">Involvement on a Trial Study Group</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH5-N33t-dQUXp7PHFG-LMy86iZYOW7oNY6r1KlMqZtCU7_9Bm2O0pf6pv2GGk2TULnlhYOOKIda_jE0VIQ7TTTrogeFB7bPXxNAYtBPpL2mpPRs3fgLXnlsSBi-yqMWF2vrulaP9xMQw/s1600/IMG_3079.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="293" data-original-width="320" height="183" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH5-N33t-dQUXp7PHFG-LMy86iZYOW7oNY6r1KlMqZtCU7_9Bm2O0pf6pv2GGk2TULnlhYOOKIda_jE0VIQ7TTTrogeFB7bPXxNAYtBPpL2mpPRs3fgLXnlsSBi-yqMWF2vrulaP9xMQw/s200/IMG_3079.jpg" width="200" /></a>The difference of involving patient/public might be that the Group gains the different perspective - a greater patient relevance. It may help with the explanation of the way a study may need certain design and with locations of data collection. It may assist with the ethics - helping overcome possible risks to patients by already having their views. Involvement in governance allows us to explore how important to patients are adverse events. Yet, how representative of population are they? How do we address the challenge of wider reach and how to communicate/ methods of research- social media may not work for all.</div>
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<span style="font-style: italic;">The IMPACT might be measured by having…</span><br />
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<span style="font-style: italic;">Examples of the modification of the study design which came from the patient partner</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQoifm3R2DjIeq2Xk3mdWC18Pexv8FSvz6spgHFPSLoYk3Kd1UbxRvruPS-WzILn5d-tctMHp69eQ6MCydDLDpsoefRXuf7CgVXKktL8Kbo7xdd5GpIEg9umE_FAzPICVpc3MxbKinBf8/s1600/IMG_3081.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="288" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQoifm3R2DjIeq2Xk3mdWC18Pexv8FSvz6spgHFPSLoYk3Kd1UbxRvruPS-WzILn5d-tctMHp69eQ6MCydDLDpsoefRXuf7CgVXKktL8Kbo7xdd5GpIEg9umE_FAzPICVpc3MxbKinBf8/s200/IMG_3081.jpg" width="180" /></a></div>
The difference of involving patient/public might be that we gain ideas on what patient and public really want to see. It helps us have a patient centred approach and brings the real world to our planning with an honesty and directness. We learn about where they can get involved - eg the inspiring nature of patient stories. The involvement can help increase access to the event, raise awareness and help with the dissemination and evaluation. All of this helps dispels the myths about research and connects the clinical to the outside world</div>
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<span style="font-style: italic;">The IMPACT might be measured by having…</span></div>
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<span style="font-style: italic;">A Evaluation of the Open Day with feedback from patients </span></div>
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<span style="font-style: italic;">Greater enthusiasm from both public and researchers</span></div>
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<span style="font-weight: bold; text-decoration: underline;">If only we had more time….</span></div>
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(The following notes are from the plans for the workshop which we didn't manage to get done)</div>
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The third task was intended to get people realising that the gain from patient and public involvement isn’t just to enrich the research. As patients we learn loads of stuff about the science, the questions, and about our own health and well-being.</div>
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The Q. was to be: <b>What might patients/public learn from being involved?</b></div>
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I am currently a member of the Steering Group for the PRioRiTY ll - a group of trial methodologists looking at the uncertainties around trial retention. As patient partners we decided to ask ourselves various questions about our involvement at the beginning and half way through the study. We have started to summarise the comments and will continue until completion.</div>
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As we define and record our activity it is important to set our involvement with the <a href="https://sites.google.com/nihr.ac.uk/pi-standards/home?authuser=0">National Standards for Public Involvement</a>. This means we can measure our activity with that of others to compare and contrast; to ensure we are effective and to improve.</div>
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Participants might like to read about these and reflect on how they might be developed.</div>
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<span style="font-weight: bold;">REPORTING AND PUBLISHING</span></div>
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Almost all research, begin with search about what is already known - a literature review of published papers.</div>
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The final task was intended to ask participants to think about how they might report the patient and public involvement activity within the research, with colleagues and to the wider community.</div>
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You may want to consider submitting a document on the <a href="http://www.invo.org.uk/resource-centre/libraries/evidence-library/submit-a-document/">NIHR Involve website</a>and/or producing a paper for the journal <a href="https://researchinvolvement.biomedcentral.com/">Research Involvement & Engagement</a>journal</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-89812682425390562442018-05-15T08:53:00.001+01:002018-10-20T09:53:07.963+01:00Patient Advisory Groups (Part 3) - Purpose and Plans<div style="color: #454545; font-family: "Helvetica Neue"; font-size: 9pt; margin: 0in;">
<span style="font-weight: bold;">PURPOSE and PLANS</span></div>
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This is Part 3 in a series of posts about Patient Advisory Groups - You can read the others <a href="https://derek-online.blogspot.co.uk/2018/03/patient-advisory-groups.html">Part 1</a> and <a href="https://derek-online.blogspot.co.uk/2018/04/patient-advisory-groups-part-2-from.html">Part 2</a></div>
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<span lang="en-US">The likelihood is that the researchers will come to the Patient Advisory Group with quite specific requests so it important to keep the group focussed on the task.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">Patient Advisory Groups (PAG) that are effective, in my opinion, tend to have a very clear purpose and are resolute in achieving their goals. The explanation is very much in the title ‘advisory’ - to offer advice and give an opinion on the research and to the research team. For the most part these meetings are positive and productive.</span><span lang="en-GB"> </span><span lang="en-US">You will find that it is perfectly acceptable to disagree but it is helpful not to be disagreeable. It is useful to have some Terms of Reference and a Group Agreement.</span></div>
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<span lang="en-US">You can click the highlighted words to find some <a href="http://www.invo.org.uk/getting-started/template-one/">sample Terms of Reference</a> from the <a href="http://www.invo.org.uk/">NIHR Involve </a>website.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">By Group Agreement, I mean a few points that the group feels are important to help it run smoothly - eg Respect for other people’s views, Confidentiality where appropriate, Time keeping, etc.</span><span lang="en-GB"> </span><span lang="en-US">Once agreed it is easier for everyone to keep the meeting on track.</span></div>
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<span lang="en-US">At best, these Groups are formed at the very earliest stage of planning the research and have time to shape the research question, the ideas and thinking. In this way the group can provide useful insight about the concept of the research, the approach being taken and the writing of any proposal and grant application.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">The reality is that so much work goes into getting the research designed, agreed, approved, funded that the Advisory Group may be a later addition. Simply start from where you start. The difficulty for the researchers is that getting all this done is often on top of a day job. Once set up, even in the later stages of a study, you can be around to advise on the next study coming along and be there at the very earliest point.</span><span lang="en-GB"> </span></div>
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You will simply be where you are and you need to get up an running as quick as possible. Life doesn’t run smoothly as we know from our own personal experiences.</div>
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<span lang="en-US">It can be helpful to look at various moments in the research study where advice from the PAG could add value, eg: suggestions about recruitment and communicating information about the trial; when some initial data is being collected and perhaps showing some results; later when the trial might be struggling to get the last few participants. You might also want to look at definitive tasks eg: reviewing the Lay Summary or the Patient Information Leaflets.</span><span lang="en-GB"> </span></div>
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<span lang="en-US">The clearer you are about the task, the more likely you are to know if you have made a difference.</span><span lang="en-GB"> It is easier to capture the 'before' and 'after' information - eg Here is the leaflet before I asked the Advisory Group.</span></div>
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<span lang="en-US" style="color: #454545;">We have loads of questions to begin with that move from the most basis of ‘What is health research?” to ‘What type of research is it?’. These questions get sharper as we develop and I have found Bloom’s Taxonomy of </span><a href="https://twitter.com/messagecarla/status/617386028425474049"><span lang="en-GB">Asking Thinking Questions </span></a><span lang="en-US" style="color: #454545;">a useful guide to help reflect and consider our effectiveness.</span><span lang="en-GB" style="color: #454545;"> </span></div>
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You may therefore want to think about how the meeting is shaped to include time to 'advise', to 'understand' and to 'learn'. It is the last two that I have found most rewarding. I have learnt more about my illness, the treatments, the research and about my own health and wellbeing.</div>
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Some groups don't actually meet in person for a variety of reasons (geography, cross infection, time, etc.) They can be just as effective but it is good to spend more time at beginning getting to know each other (a short personal written statement about what you want the Group to achieve can help)</div>
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The NIHR INVOLVE Standards</div>
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<span lang="en-US">The issues raised in this series can be looked at in the light of the NIHR INVOLVE Standards which are aimed at helping us develop our thinking, understanding and practice about public involvement.</span><span lang="en-GB"> </span></div>
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I think the issues in this post fall mainly under the standard about Impact (and Working Together) - if you aren’t precise about the task then it will be nearly impossible to measure progress or impact.</div>
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My NEXT BLOG POST in this series about Patient Advisory Groups will look at DEVELOPING PEOPLE which I will place into the Standard about Learning & Developing</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-83836062797527618262018-04-25T10:24:00.000+01:002018-04-25T11:07:10.616+01:00What Children's Hospitals can look like.<div style="font-stretch: normal; line-height: normal;">
<i style="color: #454545; font-family: "helvetica neue"; font-size: 12px;">Reflecting on a visit to Sant Joan de Déu, Barcelona Hospital where the young person is at the centre of care. The key </i><span style="color: #454545; font-family: "helvetica neue";"><span style="caret-color: rgb(69, 69, 69); font-size: 12px;"><i>points</i></span></span><i style="color: #454545; font-family: "helvetica neue"; font-size: 12px;"> of my talk for<a href="http://aquas.gencat.cat/en/sobre_aquas/"> AQuAS</a> can be found <a href="https://derek-online.blogspot.co.uk/2018/04/barcelona-talk.html">here</a>.</i></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i>A view from the hill</i></span></td></tr>
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Over a year ago, I was at a Conference in London and heard about an amazing children’s hospital. The presenters, Begonia Nafria Escalera and Joana Claverol Torres, explained how children and their parents were at the centre of co-designing almost every aspect of <a href="https://www.sjdhospitalbarcelona.org/en">Sant Joan de Déu, Barcelona Hospital</a>. The photos they showed were inspiring. </div>
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A few weeks ago, I had the absolute pleasure of visiting this hospital with its wonderful outlook over the city. </div>
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The sights within the hospital are even more breathtaking. The entrance is light and airy - I have come into a a very calm environment, a playground, a welcoming educational experience. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9skwiV9FvR06tj9U_I6a7y3HOz6C70T98y_vHPw4dGkfTXeXuzGTRuftmM8sZ5qSHgTtSzlO9KxzeB2wTFVYT6f1ZFOSK6sekRyUuPc4EAjLWXogfLV-v5bpq60B0AA2VB3KxhSDZhyphenhyphenI/s1600/fullsizeoutput_14bd.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1222" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9skwiV9FvR06tj9U_I6a7y3HOz6C70T98y_vHPw4dGkfTXeXuzGTRuftmM8sZ5qSHgTtSzlO9KxzeB2wTFVYT6f1ZFOSK6sekRyUuPc4EAjLWXogfLV-v5bpq60B0AA2VB3KxhSDZhyphenhyphenI/s200/fullsizeoutput_14bd.jpeg" width="152" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">with Begonia and Joana</span></td></tr>
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Begonia and Joana were wonderful hosts and guides. They are advocates of how hospitals can be friendly, informative, care giving and at the centre of research. Our friendship is made possible through the links made by <a href="http://generationr.org.uk/">GenerationR</a> and <a href="https://twitter.com/jen_preston1">@jen_preston1</a><br />
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Thank you for giving of your time to show us and our granddaughter around. Jayah saw it as one of her highlights of her time in Barcelona. </div>
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The space is filled with objects that invite you to enter, play and enjoy. Each object actually represents parts of the human body, the heart, digestive tract, the brain and the lungs. Useful practical metaphors to be used by clinicians in later talks with children and parents. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3Y6nBzvfb86RUj4GVYHwwMdseGxU68hbUHt36-k6Lz9E-gQqS_WAVltp_AXwe2fciDMuBfbFMOe24x0rtBPltepvg6qRyo1I9-TtO7-4IjSdKzNPbN4vskNCJlrGzy4N9DLzlyKcaaD0/s1600/IMG_3351.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3Y6nBzvfb86RUj4GVYHwwMdseGxU68hbUHt36-k6Lz9E-gQqS_WAVltp_AXwe2fciDMuBfbFMOe24x0rtBPltepvg6qRyo1I9-TtO7-4IjSdKzNPbN4vskNCJlrGzy4N9DLzlyKcaaD0/s200/IMG_3351.JPG" width="150" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP1-cJbgRCsdW9JGbqFsHXaw1eKCYdVnf8rmXQrXH553hW6dzfdHCKu1P1jOzeB6m1-IymbsA0powZgLS-Zp-f4zhS704XW5uVScniP2mbbEaCgBMa3_GBKNpkxAzBl4mCexzzSBXAxqs/s1600/IMG_3363.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP1-cJbgRCsdW9JGbqFsHXaw1eKCYdVnf8rmXQrXH553hW6dzfdHCKu1P1jOzeB6m1-IymbsA0powZgLS-Zp-f4zhS704XW5uVScniP2mbbEaCgBMa3_GBKNpkxAzBl4mCexzzSBXAxqs/s200/IMG_3363.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">Hello from Nottingham</span></td></tr>
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A colourful and inviting shop (run by the hospital charity) is next to a friendly cafeteria. The parents and children played a key role in making sure the cafe area was open yet offered intimate private spaces. The staff were all smiling and helpful.</div>
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This is a hospital made for children and parents. Research is just what they do to make people better.</div>
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Sant Joan de Deu meets me as a person rather than forces me to fit into a medical world. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj38X0J-oKSl85Vuf4k5sRA5QJrQqDSsHonCZunEKGUrnU6UtMLm4MTx4rcE0j5DLsGJdqWMrvv9mLhJz-ZtWslhQWEiSo6BBeTxJb4NfV7F4zC2IT7XO91E3BA0lT7lO1W4BRmpxlXkvo/s1600/fullsizeoutput_14bb.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1142" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj38X0J-oKSl85Vuf4k5sRA5QJrQqDSsHonCZunEKGUrnU6UtMLm4MTx4rcE0j5DLsGJdqWMrvv9mLhJz-ZtWslhQWEiSo6BBeTxJb4NfV7F4zC2IT7XO91E3BA0lT7lO1W4BRmpxlXkvo/s200/fullsizeoutput_14bb.jpeg" width="142" /></a></div>
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In most Hospitals if you get cancer you enter ONCOLOGY, if you have difficulty seeing you enter OPHTHALMOLOGY, when you have difficulty breathing please enter RESPIRATORY. Here, in Barcelona, a deceptively simple leaflet asks Where are you going? and asks... “If you are a child and you need the Emergency Department then go to....”</div>
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This experience makes you question whether our hospitals use language as a means of control. I begin to wonder whether this is really acceptable any more. Perhaps it is time to turn the tide and learn from what is happening here in Barcelona and at hospitals in the UK like Alder Hey and become truly patient centred.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Efti-LV9ePPTlB_UqxrtuMjL7Q0dyKrcJ1XW6ojkB8suSoFTstmSwgHhUb5X_ww3Qig5C8xoIMdOrV7FJuuyYeSftjibOX2C5WhXsbw7WJ2GTA2tfrS6Qm8jToLv6NrSNXa1h1dIa1o/s1600/IMG_3375.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Efti-LV9ePPTlB_UqxrtuMjL7Q0dyKrcJ1XW6ojkB8suSoFTstmSwgHhUb5X_ww3Qig5C8xoIMdOrV7FJuuyYeSftjibOX2C5WhXsbw7WJ2GTA2tfrS6Qm8jToLv6NrSNXa1h1dIa1o/s200/IMG_3375.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEqhSnTg31Df3ByLggZaLnYndUHcrbxGY35T70mIQbU3Mq0q00oGdXqSFqS9zTZh2UPsdv0GUnRAWscb4ls75N2Rxrhv6YDm6JrHsCUEYaV7kdLtnQ5XjwtLFhBxEsnHqCRU_wKreT5MY/s1600/IMG_3367.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEqhSnTg31Df3ByLggZaLnYndUHcrbxGY35T70mIQbU3Mq0q00oGdXqSFqS9zTZh2UPsdv0GUnRAWscb4ls75N2Rxrhv6YDm6JrHsCUEYaV7kdLtnQ5XjwtLFhBxEsnHqCRU_wKreT5MY/s200/IMG_3367.JPG" width="150" /></a>The signs throughout the hospital make sense and are illustrated with numerous outlines, drawings and cut outs of animals. </div>
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There is forest to journey through. Cardboard trees give me the opportunity to comment.<br />
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A number of the corridors showed pictures of the many, many children who have posted pictures and thanks to the staff.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeRSXr2Ue8NDNmM-Lb958bvy6p43DulpQelzS9xdIivDxQfVDeP_rh3OzVc5eC3VUxODnldke533HX21V5xUD31MnjIaRq0s1kNK2P_Ix40mH20zBJ_HA46CbiHxi47dUzl_w6urnFWgc/s1600/IMG_3370.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeRSXr2Ue8NDNmM-Lb958bvy6p43DulpQelzS9xdIivDxQfVDeP_rh3OzVc5eC3VUxODnldke533HX21V5xUD31MnjIaRq0s1kNK2P_Ix40mH20zBJ_HA46CbiHxi47dUzl_w6urnFWgc/s200/IMG_3370.JPG" width="150" /></a>Every child's room can see out of a window (though people on the outside can't see in).<br />
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The consultation rooms and spaces are perfectly laid out to offer comfort and privacy </div>
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There is a fabulous area where children and parents can lear to cook the foods needed for their diets.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDLy2SVoweyDhAOoUwPRbUnhvZz8sn6kLW49IjnqjS3d0EybOg6a83vNsHjPMfXMaNQg5PHIUBX9gcTgPxg6WhP4aWmW4KNZNrb_qySsMEbA_5s7fJcGyDm342sau9LF0cL77J6-iU7Go/s1600/IMG_3390.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDLy2SVoweyDhAOoUwPRbUnhvZz8sn6kLW49IjnqjS3d0EybOg6a83vNsHjPMfXMaNQg5PHIUBX9gcTgPxg6WhP4aWmW4KNZNrb_qySsMEbA_5s7fJcGyDm342sau9LF0cL77J6-iU7Go/s200/IMG_3390.JPG" width="150" /></a>A camera records the cook at the cooker and it is displayed on a seen for others to see and learn.<br />
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Everything is done to help children and their parents help comprehend and cope with the circumstances in which they find themselves.<br />
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Dolls, diagrams and soft toys explain, illuminate and help all of us understand. </div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There is no doubting the knowledge and pursuit of excellence at Sant Joan de Deu. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz3VsqmyXPbH7vcRQ9pIVY1yH4jKUwsdzwLXvg3LTHmYu-lq-izdX9l0ZexEUgeYM97OsDd6QEYY14_n70e2i1RPjG1DkhpwuFySpjXVkgxDpkM5vayeQOVlCb19x72illDTMCQzcKNyY/s1600/IMG_3396.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz3VsqmyXPbH7vcRQ9pIVY1yH4jKUwsdzwLXvg3LTHmYu-lq-izdX9l0ZexEUgeYM97OsDd6QEYY14_n70e2i1RPjG1DkhpwuFySpjXVkgxDpkM5vayeQOVlCb19x72illDTMCQzcKNyY/s200/IMG_3396.JPG" width="150" /></a><span style="font-family: "arial" , "helvetica" , sans-serif;">As part of our visit we witnessed the simulator suite, the use of technology and the briefing rooms. This is a modern, digitally aware community of practice that is striving to improve treatment and care. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It clearly confident in its shoes - they may seem to be child sized yet they make such large steps that change the way we think about the hospital experience. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There is a thorough understanding of the emotional and psychological needs of parents and children at times of that can be so traumatic and difficult. </span></div>
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<span style="font-family: "helvetica neue";">This is an enlightened management that doesn’t just listen to children and their families but thinks and acts upon what they have heard. Thank you!</span><br />
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<span style="font-family: "helvetica neue";">And, </span><span style="font-family: "helvetica neue";">talking on enlightened things - here is a short animation about </span><span style="font-family: "helvetica neue";">Children’s Research from Nottingham University Trust Hospitals </span><a href="https://youtu.be/mPvCNGg6D0E" style="font-family: "Helvetica Neue";"><span style="color: #e4af0a;">https://youtu.be/mPvCNGg6D0E</span></a><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-9452867109176035772018-04-16T20:14:00.001+01:002018-10-20T09:52:28.190+01:00Patient Advisory Groups (Part 2) - From Story to Reflection (Inclusion)<div style="color: #454545; font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; line-height: normal;">
<b>From STORY to REFLECTION </b>(<a href="https://sites.google.com/nihr.ac.uk/pi-standards/standards/inclusive-opportunities?authuser=0">Standard: Inclusion</a>)</div>
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There is a big difference between using our experience and the retelling of the events in chronological detail. There is an even larger gulf between only hearing the voices of a select few and understanding the needs of others, especially those whose voices are seldom heard.</div>
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My cancer was like a fulcrum in my life. What had seemed an ordinary path suddenly altered pace, sense and direction. I would be asked to speak at conferences and meet with NHS staff. I chose to select certain moments for praise and made a few suggestions for improvements rather than just telling my story or being critical. This approach seemed to be appreciated and often led to an invite to attend another meeting, group, workshop, committee… (How many of us recognise that simple pattern and realise the unexpected journey we have taken?). I also became fascinated by the scale of challenge faced by the NHS and for research. </div>
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The fulcrum’s turn also helped me shift from my patient experience to actively using the events as a means for change. It is the moment, if you like, that we stand and take stock. It is the time that we begin to reflect…from ‘what if?’ to ‘what can we do?’. It is as you realise that many people don’t get the opportunity to have their say - to influence, prioritise and shape research. It carries with it a responsibility to reflect the needs of others and an action to do something about it.</div>
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However, it is still very necessary for people to have an opportunity to explain the circumstances that brought them to the table. This can be done in a variety of ways through pre-meetings, a 1:1 with the chair of the group or inviting a different person to spend 5 minutes at the beginning of a meeting on a selected part of their journey (eg diagnosis or treatment). Equally, this can be done in pairs. These brief opportunities can be especially valuable if related to later items on an agenda as it provides safe space to think and talk before speaking out in a group setting. For example if the researcher is looking at a genetic test then asking members of group if genetic testing was ever mentioned and if so what was said.</div>
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The point of this is to make sure that the focus is on being an Advisory Group. (This is different from a Support Group yet often the best support I have seen is amongst members of an Advisory Group) </div>
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We are there <i>to advise</i>, to <i>offer opinion</i> to <i>help</i> the research team to develop the actual research (eg: the research topic, question, inclusion measures, etc., etc). We might also make suggestions about how to involve patients and the public at different stages of the research (eg: discussion groups about outcome measures, people to review the Patient Information Leaflets, etc.). </div>
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In my experience, we tend to do both - be the advisors and the practical helpers. There is nothing wrong but I do wonder whether this requires more thought and clearer separation. </div>
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This type of reflection can be a useful discussion point to visit at meetings. They also move people from their personal experience to be able to consider other people’s views especially those who maybe can’t attend such meetings. This reflection on the needs of others, about people they have met along the way and those they didn’t come across. It is one of the difficulties is that the stories we tend to hear are from people who are able to attend such meetings. We tend to be of a certain age, background and culture with the availability of time. </div>
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It is vital that all Advisory Groups address equality and diversity. Part of that is <i><b>advising </b></i>the research team how they might engage with certain groups, communities and cultures. </div>
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The Group may also want to consider holding some of their meetings in the community and at different times of the day and week. Only last week I joined a researcher to talk with a group of Mums who meet regularly at a community centre. The atmosphere was much more relaxed and friendly. It was less about us entering a research world and more about bringing research into normal life. </div>
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We must always remember that research should be carried out with the people who should benefit so it vital that the research reaches out in this manner. This is especially important if we are to effectively address health inequalities and matters that are relevant to patients. </div>
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You may finally want to regularly review the membership to ensure there new people come along whilst others as they move on can become supporters and advocates. </div>
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<span style="text-decoration: underline;"><a href="https://sites.google.com/nihr.ac.uk/pi-standards/about-us?authuser=0">The Public Involvement Standards</a></span></div>
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The issues raised in this series can be looked at in the light of the Public Involvement Standards which are aimed at helping us develop our thinking, understanding and practice about public involvement. </div>
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I think the issues in this post fall mainly under the standard about Inclusion. It is through ‘reflection’ we may wish to look around the room and consider how our group matches the age, background, culture of those who have the condition. We should reflect on the others we met in clinics and consultations and ask whose voices are missing? </div>
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It is also about people feeling welcomed to the Group, whether they are included in the discussion and contributions are valued. </div>
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My NEXT BLOG POST in this series about Patient Advisory Groups will look at PURPOSE & PLANS which I falls into the Standard about IMPACT</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-74124305891360978922018-04-04T06:52:00.000+01:002018-04-07T09:15:17.190+01:00The WHYs of PPI (My Barcelona Talk)<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">WHY do we do Patient and Public Involvement in Research (key points from my talk in Barcelona - more to come about their excellent work)</span><br />
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">For the </span><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Agency for Health Quality and
Assessment of Catalonia<span style="mso-bidi-font-weight: bold;"> (AQuAS)<o:p></o:p></span></span></div>
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<span style="color: red; font-family: "calibri"; font-weight: bold;">Jornada SARIS sobre PARTICIPACIÓ EN
RECERCA / </span><span style="color: red; font-family: "calibri"; font-weight: bold;">SARIS
Event </span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">In this presentation I am
exploring 2 questions…<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #353535; font-family: "arial"; mso-bidi-font-weight: bold; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">Why is patient
engagement in research important and beneficial for all? </span><span style="color: #353535; font-family: "arial"; mso-bidi-font-weight: bold;"><o:p></o:p></span></div>
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</span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">What works in
patient engagement in research in the UK?</span><span style="color: #353535; font-family: "arial"; mso-bidi-font-weight: bold;"><o:p></o:p></span></div>
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<i>(You might like to read the preparatory post <span style="color: red;"><a href="https://derek-online.blogspot.com.es/2018/03/participacio-en-recerca.html">here</a>.</span><span style="color: red;"> You</span><span style="color: red;"> might want to know that Catalonia are using the word Participation to cover Involvement and Engagement</span>)</i></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Words and meaning<o:p></o:p></span></b></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">This talk is about inviting patients
and the public to actively participate with researchers - to help as partners
in joint endeavour.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">For example: To identify the
research questions, to help prioritise and shape the way the research is
designed, planned, delivered and disseminated. </span><span style="color: #353535; font-family: "arial"; mso-bidi-font-weight: bold;"><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">It is about <b>Doing</b> <b>WITH</b>
<u>not</u> doing TO! <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Fv4zm2QEtcllpDNjXZF6WJwsDMSSnSynvmsqwLwN5A5Xf-cW2_1nYeTEO9piy_UaIc-O2zALHqXTrkRxmbeEs01pDbrp3YStbqMg3F8tjbhn6QFd2upG4mlh-iUx61R7xKiXLfhqtfU/s1600/Bulls+Head.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1236" data-original-width="992" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Fv4zm2QEtcllpDNjXZF6WJwsDMSSnSynvmsqwLwN5A5Xf-cW2_1nYeTEO9piy_UaIc-O2zALHqXTrkRxmbeEs01pDbrp3YStbqMg3F8tjbhn6QFd2upG4mlh-iUx61R7xKiXLfhqtfU/s200/Bulls+Head.jpg" width="160" /></a><b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><o:p> </o:p></span></b></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">WHY? A bull’s head or a bicycle saddle?</span></b></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">Picasso's sculpture invites us al tol see things
differently and benefit from each other’s perspectives</span><span style="color: #353535; font-family: "arial"; mso-bidi-font-weight: bold;"><o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Why are we doing this?</span></b></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">I have placed the key Catalonian elements as part of</span><span lang="EN-US" style="color: #1f497d; font-family: "calibri"; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman";"> a </span><span lang="EN-US" style="font-family: "calibri"; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman";">continuum:</span><span style="font-family: "times new roman";"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri"; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman";">Inform</span><span style="font-family: "times new roman";"><span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 1;"> </span></span><span lang="EN-US" style="font-family: "calibri"; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman";">Consult</span><span style="font-family: "times new roman";"><span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 1;"> </span></span><span lang="EN-US" style="font-family: "calibri"; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman";">Dialogue</span><span style="font-family: "times new roman";"><span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 1;"> </span></span><span lang="EN-US" style="font-family: "calibri"; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman";">Co-create</span><span style="font-family: "times new roman";"><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">I suggest that each of these has to be a two-way
relationship. If you want PARTICIPATION to be meaningful then each element has
to be authentic. It cannot be one-way communication.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">With a continuum, we can move back and forward from
the possibly <i style="mso-bidi-font-style: normal;">passive</i> to the far more <i style="mso-bidi-font-style: normal;">active</i>, from the telling to listening,
from hearing to joint endeavour. From individual to collaboration. <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Language and understanding are important. If I think I
am going to have a real say in shaping the ideas of your research but all you
want to do is give me some medicine then we are at cross purposes.<o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">WHY - the big themes </span></b></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">A number of
abstract themes are often referred to when we speak about the need to engage
and involve patients and the public in health research. These include:<o:p></o:p></span></i></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "wingdings"; mso-ansi-language: EN-US; mso-bidi-font-family: Wingdings; mso-fareast-font-family: Wingdings;"><span style="mso-list: Ignore;"> §<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Democratic
citizenship <o:p></o:p></span></div>
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sense<o:p></o:p></span></div>
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money<o:p></o:p></span></div>
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change<o:p></o:p></span></div>
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<o:p></o:p></span></div>
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decision making<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">It doesn’t matter but each is a good reason when
trying to persuade others.<o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span></b></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Why – from the Actors</span></b></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">From ‘grand
themes’ to ‘real people’, Involvement for…<o:p></o:p></span></i></div>
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- brings real life to the research<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "wingdings"; mso-ansi-language: EN-US; mso-bidi-font-family: Wingdings; mso-fareast-font-family: Wingdings;"><span style="mso-list: Ignore;">§<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Funders
- checks that money is being well spent<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "wingdings"; mso-ansi-language: EN-US; mso-bidi-font-family: Wingdings; mso-fareast-font-family: Wingdings;"><span style="mso-list: Ignore;">§<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Research
managers – greater confidence to recruit and retain study participants <o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "wingdings"; mso-ansi-language: EN-US; mso-bidi-font-family: Wingdings; mso-fareast-font-family: Wingdings;"><span style="mso-list: Ignore;">§<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Patients
and Public - means helping shape the future and gives reassurance<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "wingdings"; mso-ansi-language: EN-US; mso-bidi-font-family: Wingdings; mso-fareast-font-family: Wingdings;"><span style="mso-list: Ignore;">§<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Government
- demonstrates tangible impact of policy decisions<o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwNrBZIPiJ1-Wu6AKFtw5IU_jYmYFQooeBTjbjJElOsBetxYzvAe6g-nNB8b5b6GoyGNhHQ5Ky1ZoK1xl4xLSDPsNii9TNDg5-2WnwgfGJyvPz9-h39ZhyJfNU6yLSUjzTyAfnY2nQyow/s1600/Smartphone.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1288" data-original-width="768" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwNrBZIPiJ1-Wu6AKFtw5IU_jYmYFQooeBTjbjJElOsBetxYzvAe6g-nNB8b5b6GoyGNhHQ5Ky1ZoK1xl4xLSDPsNii9TNDg5-2WnwgfGJyvPz9-h39ZhyJfNU6yLSUjzTyAfnY2nQyow/s200/Smartphone.jpg" width="118" /></a></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Why - as a result of societal changes </span></b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">The daily
development of digital technologies and internet provide further reasons for
change:<o:p></o:p></span></i><br />
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span></i></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Access
to Information and communication including open studies <o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Rise
in patient advocacy through use of social media<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Consumerism,
human rights and higher expectations are communicated more rapidly <o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">There
is also less deference to authority<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">More
populism and rejection of experts<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span></b></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span></b></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Why - when involving patients is policy </span></b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">In England, the establishment of the <a href="https://www.nihr.ac.uk/">National Institute for Health Research (NIHR)</a> has created a <i>Research System</i> aligned to the
National Health Service (NHS). The insistence on patients as partners is viewed as
essential and crucial.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">It is NIHR Policy to require and expect patient
involvement (as participation is called in England) in:<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Development
of research concepts<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">All
funding calls and commissioned research<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Grant
applications and fellowships awards<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Bids
for Local Clinical Research Networks, Biomedical Research Centres and Clinical
Research Facilities<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="color: #353535; font-family: "symbol"; mso-ansi-language: EN-US; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Funding
and Review Committees at national and local level<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"> </span><br />
<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"> (<i>The bottom line is engage and involve or you don’t
get money</i>)<o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span></b></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">WHY - for research and researchers</span></b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><span style="mso-spacerun: yes;"> </span>(Image of the <a href="https://www.nihr.ac.uk/about-us/CCF/funding/how-we-can-help-you/RDS-PPI-Handbook-2014-v8-FINAL.pdf">Research Cycle from Research Design Service</a>)<o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span></i>
<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">All <b style="mso-bidi-font-weight: normal;">WHY</b>s have to translate into simple <b style="mso-bidi-font-weight: normal;">SO WHATs for the actual research </b>(That
is: So what has happened as a result…). Here are some real practical
improvements:<o:p></o:p></span></i></div>
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</div>
<ul>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Appropriateness of the research priorities<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO8xfEwPdAwnt6gn0WXuWGsb4Orwk2neALimZ6a9m-iRodSUUu2ztMHGC85xvGfcL1tGPXReDQ3yEnzV-hpyObRUUTMahnmCjgBXR-3kruqJrybv3AnUT-IVTKcGbdxG_WopbZVHzOBCs/s1600/Cycle.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="794" data-original-width="998" height="158" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO8xfEwPdAwnt6gn0WXuWGsb4Orwk2neALimZ6a9m-iRodSUUu2ztMHGC85xvGfcL1tGPXReDQ3yEnzV-hpyObRUUTMahnmCjgBXR-3kruqJrybv3AnUT-IVTKcGbdxG_WopbZVHzOBCs/s200/Cycle.jpg" width="200" /></a></div>
</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">More relevant research questions</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Improved inclusion and exclusion criteria</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Understandable lay summaries</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Readable Patient Information Leaflets</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Reassurance for Ethics</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Value to Patients for Funders</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Better quality of outcome measures</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Suitability of recruitment plans</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Informing other patients</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Valuable insights to management, analysis</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Interpretation of data</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Greater spread of dissemination</span></li>
</ul>
<br />
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<span style="color: white; font-family: "calibri"; language: en-US; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: +mn-cs; mso-bidi-theme-font: minor-bidi; mso-color-index: 14; mso-fareast-font-family: +mn-ea; mso-fareast-theme-font: minor-fareast; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: white; mso-style-textfill-fill-themecolor: light1; mso-style-textfill-type: solid;">Planning</span></div>
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<span style="color: #353535; font-family: "arial"; text-indent: -18pt;">These practical changes are also evidence by</span></div>
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<ul>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Different
culture at meetings</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">More
open dialogue</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Better
funding decisions</span></li>
</ul>
<br />
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Nottingham Biomedical Research Centre<o:p></o:p></span></b></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">We are writing our plans
around the concept that Nottingham is Research</span><span style="color: #353535; font-family: "arial"; mso-bidi-font-weight: bold;">. </span><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;">Our People Strategy </span><span lang="MR" style="color: #353535; font-family: "arial"; mso-ansi-language: MR; mso-bidi-font-weight: bold;">focusses on</span><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US; mso-bidi-font-weight: bold;"> Community, Impact and Learning</span><span style="color: #353535; font-family: "arial"; mso-bidi-font-weight: bold;"><o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><o:p> </o:p></span></b><b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">WHY - WHY NOT?</span></b></div>
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<i><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">In my experience there is a tipping point when the
community of researchers and patients come together when the penny drops, when
dialogue becomes truly open. The following quotes illustrate the phrases we
hear:<o:p></o:p></span></i></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">From researchers<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">“We don’t know why we didn’t do this before” <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">“Involvement just makes common sense”<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">“My research is so much richer”<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">“It’s a positive reminder of our purpose”<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">From active patients<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">“I have a better understanding of my health”<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><span style="mso-spacerun: yes;"> </span>“I know more
about the latest research”<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">“I feel I am part of the solution rather than a
problem”<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">From NIHR<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">600000 people in 2016-17<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Under 30 Days to recruit 1st patient<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Hospitals active in research have better outcomes <o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Patient Surveys - participants liked taking part<o:p></o:p></span></div>
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<b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><o:p> </o:p></span></b><b><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">What
makes it work?</span></b></div>
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<i style="mso-bidi-font-style: normal;"><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">I have embedded
hyperlinks <o:p></o:p></span></i></div>
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<!--[if !supportLists]--><span style="color: #353535; font-family: "arial"; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><a href="https://www.scie.org.uk/publications/guides/guide51/what-is-coproduction/principles-of-coproduction.asp"><span style="font-family: "arial";">Principles</span></a><span style="color: #353535; font-family: "arial";"><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #353535; font-family: "arial"; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><a href="https://www.nihr.ac.uk/patients-and-public/documents/Going-the-Extra-Mile.pdf"><span lang="EN-US" style="font-family: "arial"; mso-ansi-language: EN-US;">Policy</span></a><span style="color: #353535; font-family: "arial";"><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #353535; font-family: "arial"; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><a href="http://www.invo.org.uk/"><span lang="EN-US" style="font-family: "arial"; mso-ansi-language: EN-US;">Guidance </span></a><a href="http://www.invo.org.uk/"><span lang="EN-US" style="font-family: "arial"; mso-ansi-language: EN-US;">and advice</span></a><span style="color: #353535; font-family: "arial";"><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #353535; font-family: "arial"; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><a href="https://www.nihr.ac.uk/patients-and-public/how-to-join-in/patient-research-ambassadors/"><span lang="EN-US" style="font-family: "arial"; mso-ansi-language: EN-US;">Ambassadors</span></a><span style="color: #353535; font-family: "arial";"><o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="color: #353535; font-family: "arial"; mso-fareast-font-family: Arial;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><a href="https://www.nihr.ac.uk/patients-and-public/learn-about-research/"><span lang="EN-US" style="font-family: "arial"; mso-ansi-language: EN-US;">Learning &
development</span></a><span style="color: #353535; font-family: "arial";"><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">Along with resources, support</span><span style="color: #353535; font-family: "arial";"> and </span><span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">time</span><span style="color: #353535; font-family: "arial";"><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">You also need</span><span lang="MR" style="color: #353535; font-family: "arial"; mso-ansi-language: MR;">…</span></div>
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<ul>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Enthusiasm</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Champions</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">To let go</span></li>
<li><span style="color: #353535; font-family: "arial"; text-indent: -18pt;">Authenticity</span></li>
</ul>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><b><span style="font-size: large;">Moltes gràcies</span></b></span><span style="color: #353535; font-family: "arial";"><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">From Dame Sally Davies, Chief Medical Officer<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">“No matter how complicated the research, or how
brilliant the researcher, patients and the public always offer unique,
invaluable insights.” <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVWk9hhUH5QJ2N0RzT1u0N-Ld_VMbIY3kGGhzYHTef88zqk2ootE5EMQ-5wXzyQtRbgYl4Zq9j_LZg0KqumrThckhD4bALaTSO6ilKEto-uBDm_6VCAuptiD7Q6wu_MGoQ6b_137yxpyc/s1600/Rosetta.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="664" data-original-width="1600" height="82" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVWk9hhUH5QJ2N0RzT1u0N-Ld_VMbIY3kGGhzYHTef88zqk2ootE5EMQ-5wXzyQtRbgYl4Zq9j_LZg0KqumrThckhD4bALaTSO6ilKEto-uBDm_6VCAuptiD7Q6wu_MGoQ6b_137yxpyc/s200/Rosetta.jpg" width="200" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">As for the Rosetta Stone - In our dialogue we need to ensure the language of government, the people are translated with images to help everyone understand. </span></div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span>
<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /><b>LINKS</b></span><br />
<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span>
<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">During the Question and Answer section, I mentioned a couple of resources.</span><br />
<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span>
<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><b><a href="http://slginvolvement.org.uk/wp-content/uploads/2016/09/Lab-based-research-FINAL-10-8-16-public.pdf">Laboratory and non-patient facing research</a></b> (including Public Health) might find this paper of interest </span><span style="color: #454545; font-family: "helvetica neue";">http://slginvolvement.org.uk/wp-content/uploads/2016/09/Lab-based-research-FINAL-10-8-16-public.pdf</span><br />
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<div>
<span style="color: #454545; font-family: "helvetica neue";"><b><a href="http://hieh.hpru.nihr.ac.uk/our-research/ppippe">Health Protection Research Units</a></b> - Here is a </span><span style="color: #454545; font-family: "helvetica neue";">useful Strategy document </span>http://hieh.hpru.nihr.ac.uk/our-research/ppippe</div>
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<span style="color: #454545; font-family: "helvetica neue";"><b><a href="http://www.cancerresearchuk.org/sites/default/files/cancer_research_uk_patient_involvement_impact_report.pdf">Impact of Patient Involvement </a></b>- Cancer Research UK produced this useful report </span>http://www.cancerresearchuk.org/sites/default/files/cancer_research_uk_patient_involvement_impact_report.pdf</div>
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<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;"><br /></span>
<span lang="EN-US" style="color: #353535; font-family: "arial"; mso-ansi-language: EN-US;">This post on my BLOG details many of the relevant
links about Active Involvement as we describe ‘participation’ in UK<o:p></o:p></span></div>
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<a href="http://derek-online.blogspot.co.uk/2016/11/is-this-what-we-should-all-know-for_25.html"><span style="font-family: "arial";">http://derek-online.blogspot.co.uk/2016/11/is-this-what-we-should-all-know-for_25.html</span></a><span style="font-family: "arial";"><o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-9748220495744404462018-03-27T14:40:00.001+01:002018-12-09T10:35:22.929+00:00Patient Advisory Groups (Part 1)<div style="font-stretch: normal; line-height: normal;">
<b><span style="color: #454545; font-family: "helvetica neue";"><span style="font-size: 12px;">Patient Advisory Groups for Research Studies - some random thoughts over a few blog posts</span></span></b></div>
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A few weeks ago I was asked about 'how to set up and run a Patient Advisory Group'. The question came from someone who had been asked to chair a Group who had tried looking for something more than Terms of Reference. </div>
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REQUEST: So, other active patient involvers*: Do you have any good stories, posters, reports?</div>
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The questions I am exploring in this series are:</div>
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<li><span style="font-family: "arial" , "helvetica" , sans-serif;">What are Patient Advisory Groups? </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">How do they work best? </span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">What might be helpful to know?</span></li>
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And...How might these match with the <a href="https://www.nihr.ac.uk/news-and-events/documents/Public_Involvement_Standards_March%202018_WEB.pdf">NIHR INVOLVE Standards</a> for Public Involvement?</div>
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<b>THE EXPERTISE of EXPERIENCE</b> (Standard: Working Together)</div>
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I think the first thing to note is that it is often because of our personal experiences, we become members of a Patient Advisory Group.</div>
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We attend to offer insights that are rooted in that experience. We may have similar conditions and the same treatments yet our journeys are often quite personal and unique. This is valuable and useful knowledge that is helpful for researchers.</div>
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Our role is to bring that different perspective -a new pair of eyes to an issue. We are present to ask a question, shake a stick, gently puncture an opinion, challenge an attitude and occasionally declare that the Emperor has no clothes. </div>
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Most of the time our experience and knowledge helps ground the research in real life, adding a pinch of common sense. Our voices and presence provide different perspectives for a study that might not have been considered, thought relevant or seen as a priority. </div>
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I had no knowledge of science, medicine or research when I began and I am not sure whether I know that much more now. I have, however, usually found that it helps members of the Group to have some interest and curiosity about research, treatments and science, combined with a willingness to learn. Ultimately, though, it is our experience that matters most. This is our ‘Specialist Knowledge’ section. </div>
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As Dame Sally Davies, the Chief Medical Officer says, “No matter how complicated the science, or how brilliant the researcher, patients and the public always offer unique, invaluable insights.” </div>
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The other people in the research team bring the expertise in science, treatments and research. They often come with such extensive knowledge that they welcome the opportunity to try to make their work more understandable and accessible to the public. </div>
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When we, as patients, first get involved it all seems a bit strange. I liken it to spending a few days in another country such as France or Spain. Certain things are familiar but others are different. I’m okay reading something slowly but speaking seems almost impossible. I use a few useful phrases, understand a little bit of the culture and then realise that there is a lot to more to learn from each other’s history, people and customs. Over time we start to have a greater understanding of each other. </div>
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One of the challenges is that the Group can become the only source of the ‘advice’ and that risks it being insular and potentially exclusive. It can be really valuable to work with local support and self-help groups, to encourage the researchers to visit out-patient and other clinics to get that current and immediate reality check. It can be helpful to target specific communities where the risk of the condition is higher. These contacts can also help develop a broader network with whom you can communicate especially about progress and the results.</div>
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<u><a href="https://www.nihr.ac.uk/news-and-events/documents/Public_Involvement_Standards_March%202018_WEB.pdf">The NIHR INVOLVE Standards</a></u></div>
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The issues raised in this series can be looked at in the light of the NIHR INVOLVE Standards which are aimed at helping us develop our thinking, understanding and practice about public involvement. </div>
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I think the issues in this post fall mainly under the standard about Working Together. </div>
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As we explore this Standard, we may want to reflect on the relationship, the levelness of the playing field and the mutual benefits of this joint endeavour. </div>
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I encourage Groups to capture the narrative about what what Working Together means: a) for the research, b) for the patients, c) for the researchers. This will prove more useful than counting the meetings we held and the numbers who attended. A good example might an article from local media coverage mentioning the involvement and the research: <a href="https://www.nottinghampost.com/news/health/nottingham-lead-fight-against-breast-1381253"><span style="color: #e4af0a;">https://www.nottinghampost.com/news/health/nottingham-lead-fight-against-breast-1381253</span></a></div>
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I would also ask people to think about what made it work and how you overcame any barriers you faced. Finally, what mistakes do you make and what did you learn most?</div>
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* <a href="https://twitter.com/rheumpatient">@RheumPatient</a> has just kindly suggested this excellent <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12478#support-information-section">paper </a>https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12478#support-information-section<br />
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You might like to read the following posts in this series <a href="https://derek-online.blogspot.com/2018/04/patient-advisory-groups-part-2-from.html" style="font-family: arial, helvetica, sans-serif;"><b>From Story to Reflection - Part 2</b> </a><span style="font-family: "arial" , "helvetica" , sans-serif;">;</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><b style="font-family: arial, helvetica, sans-serif;"><a href="https://derek-online.blogspot.com/2018/05/patient-advisory-groups-part-3-purpose.html" style="font-family: arial, helvetica, sans-serif;">Purpose and Plans - Part 3</a> </b><span style="font-family: arial, helvetica, sans-serif;">and <a href="https://derek-online.blogspot.com/2018/10/patient-advisory-groups-part-4.html">Developing People - Part 4</a></span><span style="font-family: "arial" , "helvetica" , sans-serif;">.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><i style="font-family: arial, helvetica, sans-serif;">The final article will look at how we record and report on the activity of a Patient Advisory Group: A Tale to Tell along with a separate post on Becoming a Member of an Steering Group</i><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-67247751154896432592018-03-13T22:50:00.004+00:002018-03-13T22:50:58.663+00:00Participació en recerca
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0iZ7Upn5K59HTxrjbRfEpBT0GRL-vqzgQRF35mp_YGuK93BG-Gfm-LnYhU_uT_RFP1jTN-F_Gx8DzEHM20RO14HWjoJgVV4qHPBTdXdGDpd6XS1xDRocPBVXyUv4OSSmeAGwWRIq2dOg/s1600/Bulls+Head.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1236" data-original-width="992" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0iZ7Upn5K59HTxrjbRfEpBT0GRL-vqzgQRF35mp_YGuK93BG-Gfm-LnYhU_uT_RFP1jTN-F_Gx8DzEHM20RO14HWjoJgVV4qHPBTdXdGDpd6XS1xDRocPBVXyUv4OSSmeAGwWRIq2dOg/s200/Bulls+Head.jpg" width="160" /></a><span style="font-size: large;">What do you see - a bull’s head or a bicycle saddle and handlebars? </span></div>
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Is health research the saddle or the bull - some people might see the protocol and others live the experience. </div>
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But sometimes it is about more than the way we see each other. The words we use and the way we hear them can separate us.</div>
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Even a song can be interpreted differently by various artists and makes you wonder if we should say - Let’s Call the Whole Thing Off. One version of the song by George and Ira Gershwin is sung by <a href="https://www.youtube.com/watch?v=zZ3fjQa5Hls">Ginger Rogers and Fred Astaire</a> and the other gives us <a href="https://www.youtube.com/watch?v=CIYS9EQWkXg">Ella Fitzgerald and Louis Armstrong</a>.</div>
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<span jsname="YS01Ge" style="color: #222222; font-family: arial, sans-serif;">"But, oh, if we call the whole thing off</span><br style="color: #222222; font-family: arial, sans-serif;" /><span jsname="YS01Ge" style="color: #222222; font-family: arial, sans-serif;">Then we must part</span><br style="color: #222222; font-family: arial, sans-serif;" /><span jsname="YS01Ge" style="color: #222222; font-family: arial, sans-serif;">And, oh, if we ever part, then that might break my heart"</span></div>
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I mention Picasso's work and these other examples as I have been invited to speak in Barcelona. </div>
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I have the pleasure of working with Paula Adam Bernad and Ion Arrizabalaga Garde from AQuAS, the Agency for Health Quality and Assessment of Catalonia*. </div>
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We have, of course, different perspectives but instead of calling the whole thing off we are working together to shape the presentation I shall give - co-creating!</div>
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The differences are encapsulated by...</div>
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<b>LANGUAGE</b> - Some Catalonian, Spanish, English and of course a wee nimsh o’ Scots can actually bring us together</div>
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<b>VOCABULARY</b> - Participation is what I might call Involvement in England but does this really matter as long as we both are describing the same thing. </div>
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<b>EXPECTATIONS</b> - What I thought might be good to talk about may not actually be of value to those who attend the Conference.</div>
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Ultimately, we want to see patient experience, the patient voice and the presence of patients and the public making a difference. But how....</div>
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We then began a really interesting and illuminating discourse by phone and email where we tested out different ideas. I began by posing some questions to help guide my thoughts and Paula and Ion asked more about the WHY.</div>
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I am moving from what we in the UK call Patient and Public Involvement (PPI) to how it is described in Catalonia - Patient and Public Participation (PPP).</div>
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The second theme that we have agreed upon is WHAT MAKES IT WORK. So this will form the basis of the talk along with the question: <span style="font-family: Arial, Helvetica, sans-serif;">Què té a veure la pedra Rosetta
amb la participació en recerca? </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">You will need to revisit my blog on the 4th April to find out more.</span></div>
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<span style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">* El Sistema d’Avaluació de la Recerca i Innovació en Salut de Catalunya (SARIS) és un
instrument del Pla estratègic de recerca i innovació en salut (PERIS) del Departament de
Salut de la Generalitat de Catalunya. El SARIS és un ‘sistema de recerca responsable’ que
millora l’impacte del PERIS a través de l’anàlisi i la implicació dels actors. </span></span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-46227820672220640472018-03-02T11:41:00.001+00:002018-04-17T20:22:57.977+01:00We need more than information from mobile health and digital technology <div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-family: "calibri";"><b>Patients need more than information from
Technology – <o:p></o:p></b></span></div>
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<span style="font-family: "calibri";"><b>thinking about meaningful involvement</b><i><o:p></o:p></i></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><br /></span></i></div>
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<span style="font-family: "calibri";"><i>(These notes capture the main points of my talks at the <a href="http://www.edgeclinical.com/edge-conference-2018/">ASPIRE - EDGE Conference 2018</a> and the <a href="http://www.mhealth-clinicaltrials-europe.com/">mHealth event</a>)</i></span></div>
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<span style="font-family: "calibri";"><i><br /></i></span></div>
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<span style="font-family: "calibri";"><i><br /></i></span></div>
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<span style="font-family: "calibri";">When we think about <b>Mobile Health and Digital Technology</b>, whether apps, systems and
processes,</span><span style="font-family: "calibri";"> we need
to start from the research participant. We need to see it through their eyes,
wear that t-shirt, walk in those shoes, think with that mind<o:p></o:p></span></div>
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<span style="font-family: "calibri";"><span style="mso-tab-count: 2;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "calibri";">It is not
enough to think about how clever the technology is; how smart it looks, how it
uses artificial intelligence - if it doesn’t fit, I’m not going to use it – if
it doesn’t help me access research, take part, help get involved, find the
results<o:p></o:p></span></div>
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<span style="font-family: "calibri";"><span style="mso-tab-count: 2;"> </span><o:p></o:p></span></div>
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<span style="font-family: "calibri";">I love tech
but I have a drawer full of gadgets, wires, plugs that I don’t use; apps I
haven’t opened in weeks, email updates that I never open.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri";"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
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<span style="font-family: "calibri";">So, l ask
you to really think about the <b style="mso-bidi-font-weight: normal;">Research
Participant<o:p></o:p></b></span></div>
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<span style="font-family: "calibri";"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "calibri";">Research
participant is NOT just the person who arrives in a timely fashion to be
recruited to a study<o:p></o:p></span></div>
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<br /></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
</div>
<ul>
<li><span style="font-family: "symbol"; text-indent: -18pt;"><span style="font-family: "times new roman"; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "calibri"; text-indent: -18pt;">It is about the public at large</span></li>
<li><span style="font-family: "symbol"; text-indent: -18pt;"><span style="font-family: "times new roman"; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "calibri"; text-indent: -18pt;">It needs to target specific communities of
need – cultural, geographic,</span></li>
<li><span style="font-family: "symbol"; text-indent: -18pt;"><span style="font-family: "times new roman"; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "calibri"; text-indent: -18pt;">Consider where people who use or come across
NHS Settings - GP, Pharmacy, Care Homes</span></li>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgks_2gj6I7Vr3tDcnvdKou_XQmWwJjh42fxE1ybiU-nDuJ9CQhKSUF5l4Jf9aTOhxmNMvtCMasRQR3kJm17QWXd8YMqwgNP-0dgpm_FNFnXDVmUdRl3z3_rA0pBhGkXEK14nQFpmthlNc/s1600/IMG_3117.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgks_2gj6I7Vr3tDcnvdKou_XQmWwJjh42fxE1ybiU-nDuJ9CQhKSUF5l4Jf9aTOhxmNMvtCMasRQR3kJm17QWXd8YMqwgNP-0dgpm_FNFnXDVmUdRl3z3_rA0pBhGkXEK14nQFpmthlNc/s200/IMG_3117.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">A Printing Press </span></td></tr>
</tbody></table>
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<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
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<li><span style="font-family: "symbol"; text-indent: -18pt;"><span style="font-family: "times new roman"; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "calibri"; text-indent: -18pt;">Think about how the technology suits our
needs, fits with our lifestyle and uses information we already collect</span></li>
<li><span style="font-family: "symbol"; text-indent: -18pt;"><span style="font-family: "times new roman"; font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: "calibri"; text-indent: -18pt;">Crosses our daily path to the shops, the pub
and restaurant</span></li>
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<span style="font-family: "calibri";"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
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<span style="font-family: "calibri";">Technology
and Innovation themselves are not the answer. </span></div>
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<span style="font-family: "calibri";"></span><br />
<span style="font-family: "calibri";"></span></div>
<span style="font-family: "calibri"; text-align: center;"> </span><br />
<span style="font-family: "calibri"; text-align: center;"><br /></span>
<br />
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<span style="font-family: "calibri";"><o:p></o:p></span></div>
<span style="font-family: "calibri"; text-align: center;">The Printing Press was of no use if people can't read and write. With technology we have to think about how to help people use or make it so intuitive that it becomes easy.</span><br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;"><u>Meaningful Involvement</u></span></b></div>
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<span style="font-family: "calibri";">Involving patients and the public are key to making this work. I have chosen to make these Four4Involvement to help make it meaningful:
Research, Insight, Learning and Impact<o:p></o:p></span></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Involvement4Research </span></b><span style="font-family: "calibri";"><o:p></o:p></span></div>
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<span style="font-family: "calibri";">Actively involve
with a purpose and do so at the e</span><span style="font-family: "calibri";">arliest opportunity and throughout...</span></div>
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<span style="font-family: "calibri";"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
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<ul>
<li><span style="font-family: "calibri";">The <b>IDEAS</b>
Stage – About <u>CHECKING</u> on interest and worth</span><span style="font-family: "calibri";"> </span></li>
<li><span style="font-family: "calibri";">The <b>DESIGN</b>
Stage - About <u>OPINIONS</u> on what and how</span><span style="font-family: "calibri";"> </span></li>
<li><span style="font-family: "calibri";">The
<b>DEVELOPMENT</b> Stage – About <u>TESTING</u> about practicalities</span><span style="font-family: "calibri";"> </span></li>
<li><span style="font-family: "calibri";">The
<b>APPLICATION Stage</b> – About <u>USING</u> in real life</span></li>
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<tr><td style="text-align: center;"><img height="82" src="blob:https://www.blogger.com/51447a2b-eb0f-4cae-955e-c362fedfed60" style="margin-left: auto; margin-right: auto;" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;">The Rosetta Stone</span></td></tr>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;">As we communicate with Patients think Rosetta Stone - - local language, government policy and pictures.</span></b><br />
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b>
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Involvement4Insight</span><span style="font-family: "calibri";"><o:p></o:p></span></b></div>
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<span style="font-family: "calibri";"><o:p>If you have one or two patient representative they are NOT your involvement. They should be there to help you plan your involvement...</o:p></span></div>
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<tr><td style="text-align: center;"><img alt="" border="0" height="197" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcvZf_S4LUzBIBS8BCBjCubJbW7Hddq1oMO-Qi8WLHeI2sIUISQ_Z2Cut3V1HRuwHMaJBqHmW9-1qxPfkzrkWEzSaYiKvcczvd9batkwyeNL-ZMDWAt-EBGzQC4QI5GoowGy3-ujIc0Bc/s200/GenR.png" style="margin-left: auto; margin-right: auto;" title="GenerationR" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://generationr.org.uk/">GenerationR</a></span></td></tr>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Involvement4Learning<o:p></o:p></span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There must
be some benefit beyond what it adds to the research. We have to look at the opportunities to gain from each other and to signpost to where people can learn more<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I used my current favourites... </span></div>
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<tr><td style="text-align: center;"><img border="0" height="106" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYO0VL2vTbEEXN1pGqjY0LmoFkjsaUjfgOkSgNX-epQmySds0uYsKUdoli1jA3t3OC2ekNpHnm4aSXe6zj9FxouGDZIhyx9OBOdf76xXwO6ZiteSWprhqCsh_cchPbztzm1kfNzvI1d2s/s200/JDR1.png" style="margin-left: auto; margin-right: auto;" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.joindementiaresearch.nihr.ac.uk/">Join Dementia Research</a></span></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf80J1X2RCHAMv3E3aIPELbEfiCvZWLHmHDDtcjUGZdiYoS1q80KTuLhXCWIqnvVS0yGMF54Uz6RUkqzQPjLnJVTUxeEkdHUrw9ot0iGPJLUGnFvmr-AtYOqt-7mjpZOA1PUOH50kr_eo/s1600/MOOC.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="136" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf80J1X2RCHAMv3E3aIPELbEfiCvZWLHmHDDtcjUGZdiYoS1q80KTuLhXCWIqnvVS0yGMF54Uz6RUkqzQPjLnJVTUxeEkdHUrw9ot0iGPJLUGnFvmr-AtYOqt-7mjpZOA1PUOH50kr_eo/s200/MOOC.png" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.futurelearn.com/courses/clinical-research#section-overview">A free online course</a></span></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCgRgQsPA9_AMFPEgaZyj-xZqQYRu1XZzLjpZRHmQGTIdlgnCZ0lFaf3bYmU_Sh20tEKpP3lnbpep_ObWwwk__lHAsoVGHSfbRT999Y0dlBzbnoXhw9qEAUoHx_ILzhaei2O74sQBq2bU/s1600/NIHR.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCgRgQsPA9_AMFPEgaZyj-xZqQYRu1XZzLjpZRHmQGTIdlgnCZ0lFaf3bYmU_Sh20tEKpP3lnbpep_ObWwwk__lHAsoVGHSfbRT999Y0dlBzbnoXhw9qEAUoHx_ILzhaei2O74sQBq2bU/s200/NIHR.png" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.nihr.ac.uk/patients-and-public/">National Institute for Health Research</a></span></td></tr>
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri"; font-size: 14.0pt;">Involvement4Impact<o:p></o:p></span></b></div>
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<br /></div>
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<o:p><span style="font-family: "calibri"; font-size: medium;">We have to make an IMPACT. We must involve people in order to make a difference. It is basically very simple yet difficult and challenging.</span></o:p></div>
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<o:p><span style="font-family: "calibri"; font-size: medium;"><br /></span></o:p></div>
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<o:p><span style="font-family: "calibri"; font-size: medium;">Having recently bought a narrowboat I know the feeling. It is basically very simple, goes very slowly and for lots of the time you just keep it on a straight line. </span></o:p></div>
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<o:p><span style="font-family: "calibri"; font-size: medium;"><br /></span></o:p></div>
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<o:p><span style="font-family: "calibri"; font-size: medium;">It also is a different culture with a new language and skill set. It is okay to make some mistakes and to seek advice and help. Patients are a really lovely community and very willing to help. So, are the narrowboat community who seem endlessly patient with me as I make contact again and again.</span></o:p></div>
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<o:p><span style="font-family: "calibri"; font-size: medium;"><br /></span></o:p></div>
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<o:p><span style="font-family: "calibri"; font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9CGms_tTX3PMl36zyzw7gwAa39gGBs1R1ioNXeuDtW-it4MtYuPVcowPCtZuZWDEDMeohI6qlkmTFszWrR7ha5Bi0wzDCEnIDqcsxYngc16Y9YXfrYY4nd3aJHX-OFNQ7-2QxQ9xNEK0/s1600/Black+grouse.jpg" imageanchor="1"><img border="0" height="159" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9CGms_tTX3PMl36zyzw7gwAa39gGBs1R1ioNXeuDtW-it4MtYuPVcowPCtZuZWDEDMeohI6qlkmTFszWrR7ha5Bi0wzDCEnIDqcsxYngc16Y9YXfrYY4nd3aJHX-OFNQ7-2QxQ9xNEK0/s320/Black+grouse.jpg" width="320" /></a></span></o:p></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-79982805999095848372017-12-07T11:25:00.001+00:002017-12-07T11:27:54.880+00:00Making Sense of Involvement<div style="color: #454545; font-stretch: normal; line-height: normal;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>The following notes formed the basis of a workshop for the <a href="http://www.homerton.nhs.uk/choosing-homerton/education-and-training/homerton-simulation-centre/">Homerton Simulation Conference</a></b> 2017 #HomSim</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At first glance it might appear to be difficult to actively involve patients in Technology, Medical Devices, Translational Science, Surgical Procedures yet the added value of patient insight from personal experience can be helpful, innovative and transformational.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">For many years, I have offered my perspective on individual research studies, on the conduct and management of trials, on the governance and policies for research in the UK and beyond. I have contributed to helping more people take part, to improving access, time and targets by which research studies are rolled out in the NHS.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have also gained knowledge and a much broader understanding of my illness, the challenges of undertaking research and the importance of research as part of the patient pathway. I now see my active involvement as a direct influence on my own health and wellbeing. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I simply ask that you see patient experience, the patient voice and our presence as a valuable resource and a willing partnership to enrich research and improve people’s health outcomes. It is about thinking where we might <b>add value</b>.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So here are my Top Ten tips for the workshop</span></div>
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<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Start from where you are with your own work - </b>to make Patient & Public Involvement make sense.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Align the Involvement of patients to your project: </b>Choose a point e.g. in the early thinking, design, proposal application or for recruitment, etc.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Think about the patients: </b>Why and how might their experience, voices and presence make a difference?</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Make the involvement appropriate and proportional - </b>to the need, task, time and funding</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Decide on the format: </b>Do you want<b> </b>a sounding board, a buddy, partners, a discussion group, co-applicants?<b> </b></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>What is needed for the task: </b>Think of each other’s needs and always pay out of pocket expenses</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Find the relevant people: </b>Are they<b> </b>current patients, past patients, carers, patient representatives, public?</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Review regularly together with patients: </b>Use a Plan, Do, Study, Act approach.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Keep in contact: </b>provide regular updates and feedback even when little has happened.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Write it up: </b>Mention the IMPACT of the involvement on posters, presentations and publications. Thank everyone!</span></li>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In the workshop, I invited people to work in small groups to consider different points in a research idea through its development.</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-25964717307875523772017-11-16T11:08:00.000+00:002017-11-16T11:08:23.280+00:00Finders, Keepers - how to find people for research involvement and keep us interested<div style="color: #454545; font-family: "Helvetica Neue"; font-stretch: normal; line-height: normal;">
These notes are for a <a href="http://www.becandderek.co.uk/">#BecandDerek</a> workshop, <a href="http://www.uclhospitals.brc.nihr.ac.uk/sites/default/files/Finders%20Keepers%20How%20to%20access%20and%20sustain%20patients%20and%20the%20public%20for%20involvement%20in%20research.pdf">Finders, Keepers</a>, at <a href="https://www.bartshealth.nhs.uk/takepart">Barts</a> for Queen Mary's University London</div>
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<b>FINDING PEOPLE</b> - who might want to help enrich research </div>
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Many health researchers have patients or service users. They are well placed to put up a poster or ask people to help. </div>
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One clinician said to us that she sat down and thought about the different places her patients went for tests, checks and appointments and targeted those with leaflets and posters explaining what she wanted and why.</div>
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Most GPs have <a href="http://www.napp.org.uk/">Patient Participation Groups</a> and you will find local contacts - e.g. <a href="http://bit.ly/2z3E9Bm">Camden in Londo</a>n</div>
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Many health communities are using Social Media to reach out and show how they are trying to work together. Here is an example for <a href="https://twitter.com/TH2GETHER">Tower Hamlets</a></div>
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You might want to talk to those who work in the Voluntary Sector. Here is another from <a href="http://www.vcth.org.uk/">Tower Hamlets </a> and a couple from <a href="http://bit.ly/2z3AVh6">Camden Voluntary Action</a> and a <a href="http://bit.ly/1XpoTEy">Volunteer Action Centre </a></div>
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The closer to the community the more likely you are to find real people. </div>
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However, you may need to look nationally to find the local contacts. You can find a local Healthwatch <a href="http://www.healthwatch.co.uk/">here</a>.</div>
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If you are looking for Self-Help or Support Group search using <a href="http://bit.ly/1vTujLW">Self Help UK</a> </div>
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<b>CHARITIES</b></div>
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<span style="color: #454545; font-family: "Helvetica Neue";">Charities who help with health r</span><span style="color: #454545; font-family: Helvetica Neue;">esearch can be a good starting point. Many of them work together and you can most most who are leading on patient involvement are part of the <a href="http://slginvolvement.org.uk/">Shared Learning Group </a> Please use the link only to check if a charity is doing something then contact the charity directly as the group doesn't have the resource to deal with individual enquiries.</span></div>
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<b>REACHING OUT</b></div>
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University College London have produced the excellent UCL Culture and UCL Partners <a href="http://bit.ly/2zlSNo0">Guide to working with Voluntary Sector </a></div>
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East Midlands Academic Health Science Network (AHSN) have an excellent guide <a href="http://bit.ly/2huiDM3">Engaging the Seldom Heard</a> </div>
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You may also want to check out the <a href="http://bit.ly/2h267Gu">Centre for BME Health</a>, Leicester </div>
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<b>EAST LONDON</b></div>
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It would be remiss of me not to mention some of my personal favourites in this area.</div>
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The wonderful <a href="http://bit.ly/2AOZGf7">Katie's Team</a> - you can read my earlier post - <a href="http://derek-online.blogspot.co.uk/2017/08/i-want-to-be-in-katies-team.html">here</a>.</div>
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...and the wonderful <a href="http://bit.ly/2zMx3io">Genes and Health East London</a> - previous blog post - <a href="http://derek-online.blogspot.co.uk/2017/01/golden-hearts-is-anevocative-and.html">here</a>.</div>
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And a shout out for <a href="https://twitter.com/drtomround">@drtomround</a> working in East London who I met again yesterday so you may also want to check out <a href="http://bit.ly/2fO2hzA">Tower Hamlets CCG</a></div>
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Thank you - <a href="https://twitter.com/Olivia_Research">@olivia_research</a> <a href="https://twitter.com/Rohima_Research">@Rohima_Research</a> and <a href="https://twitter.com/neeta_patel1">@Neeta_Patel1</a> - always good to work with you.</div>
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<b>AS FOR KEEPERS</b> - just watch this space as our participants will be adding their thoughts and advice</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-85789134740036834902017-11-09T11:04:00.002+00:002017-11-09T13:19:26.939+00:00Pragmatic, Personal Insight<div style="color: #454545; font-family: "helvetica neue"; font-stretch: normal; line-height: normal;">
<span style="font-size: x-small;">I was invited to talk with <a href="https://twitter.com/NIHRCRNWessex">@NIHRCRN_wessex</a> about how we make involving people simpler and more practical.</span></div>
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<span style="font-size: x-small;">We have got much better at involving patients and the public at an earlier stage of designing studies. But how might patients, carers and the public get involved with the delivery of that research.</span></div>
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<span style="font-size: x-small;">Thinking about how patients might help us with the delivery of research is in everybody’s interest and everyone’s responsibility. Thinking about how we advise, support and empower people is the role of each of us working in patient and public involvement.</span></div>
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<span style="font-size: x-small;">Our task is relatively simple: </span></div>
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<b>We want it to be easier for people to find out about, take part and get involved in research and know that the experience of doing so is valued.</b></div>
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The pragmatic question for us</div>
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<b>Where do we need and want patient experience, the patient voice and the presence of patients/the public to make a difference?</b></div>
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Where might that voice best add value to the delivery of research: </div>
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<b>Awareness, Information, Access, </b><b>Communication, Recruitment and Retention, Feedback.</b></div>
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<b>Our desire</b> is that all participants are thanked for taking part, receive a lay summary of the outcome and are able to access the full results.<br />
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<b><span style="color: #454545; font-family: "helvetica neue";">So, what roles are there for patients in the delivery of research:</span></b><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><b>PATIENT EXPERIENCE</b> (as participants)</span></div>
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<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>How is information being use for quality assurance and improvement?</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>What data is already collected (such as Friends and Family) and could research form part of it?</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">How might we use technology better to gather such information?</span></li>
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<b><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">PATIENT/PUBLIC VOICE</span></b></div>
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<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Taking part in Surveys</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Helping review communications materials by email</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Reviewing results of patient experience survey</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Stories for use at meetings</span></li>
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<b><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">PRESENCE</span></b></div>
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<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Ambassadors - speaking to local groups</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Hearts and minds - talks to staff</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Sounding board - Advice about doubtful studies</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Walk throughs</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Reflecting on less successful studies</span></li>
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<i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">Note: The people we want to hear from may be different and have different skills</span></i></div>
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<b><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">HOW MIGHT WE DO THIS BETTER?</span></b></div>
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<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Team work in CRN and across NIHR, NHS, Univ and CCGs</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Agreeing certain priorities </span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Start with a clear purpose </span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Share tasks</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">Lean on each other but come up with goods</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Adopt a project by project approach with agreed deadlines</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Choose one big project with two or three smaller and medium term tasks</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Set out with Impact in mind - capture, count and circulate</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Leadership - use a partnership model</span></li>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">Our job in Patient, Public Involvement and Engagement is to offer:</span></div>
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<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Knowledge about Improving Healthcare through Research - the MOOC</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Information about support that is available - Learnzone; PRAI </span></li>
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<b>Reciprocal Benefits</b></div>
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<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="line-height: normal;"><span style="font-stretch: normal; line-height: normal;"></span></span>Greater knowledge about our illness/condition</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Understanding about current and recent research</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Finding out about how research takes place, the different methods and the time it can take</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Learning about the efforts to improve research through patient involvement</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;"><span style="font-stretch: normal; line-height: normal;"></span>Realising the way NIHR is transforming the culture and infrastructure</span></li>
<li style="color: #454545; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: x-small;">Helping shape the future including <span style="color: #212121; white-space: pre-wrap;">the use of technology to enhance the experience</span></span></li>
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<b>We have stories to tell that are valuable to patients, public and teams.</b></div>
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<b>Start telling these stories with a passion</b></div>
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<b><u>Other Sources</u></b></div>
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You might like to look at these examples of the good work that is going in Wessex...</div>
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https://www.nihr.ac.uk/nihr-in-your-area/wessex/patients-and-public.htm</div>
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Wessex AHSN Co-production http://wessexahsn.org.uk/projects/143/co-production-working-with-our-patients-and-public</div>
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http://wessexhealthlines.nhs.uk/health-lines/researchline/</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8524106636821164167.post-46556902766267819702017-09-28T08:25:00.001+01:002017-09-28T09:47:59.207+01:00What should a Strategy for Involving Local People in Research look like?<div class="MsoNormal">
<span style="font-family: "calibri";">One of the first things that strikes me about many Policies, Strategies and Plans for Engaging and Involving patients, service users, carers and the public is that they sit apart from the purpose of the organisation where they exist. The second feature is that they often just concentrate on the processes of patient and public involvement rather then its purpose to make research better - more relevant and appropriate, more accessible, quicker and easier to understand. The third feature is that they stop at research rather than connecting it to improving health and wellbeing. Fourthly, they lack measures to assess the added value patient and public insight brings.</span></div>
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<span style="color: black; font-family: "calibri";">The following framework </span><span style="color: black; font-family: "calibri";">is being d</span><span style="color: black; font-family: "calibri";">eveloped by the NIHR Nottingham Biomedical Research Centre (BRC) </span><span style="font-family: "calibri";">as means of setting out the
different elements for our Strategy. </span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri"; font-size: 14.0pt;">Producing a Strategy - </span></b><span style="font-family: "calibri"; font-size: 10pt;">Here are some of the questions we are asking.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri";">What is the ambition? </span></b><span style="color: blue; font-family: "calibri";">(AIM & PURPOSE)</span><span style="color: #969696; font-family: "calibri";"> </span><i style="mso-bidi-font-style: normal;"><span style="font-family: "calibri";">- Involving and engaging patients and
the public is the means of achieving the ambitions . Involvement is an
enabler, a vehicle that provides unique insight to help deliver high quality
research to improve future health.<o:p></o:p></span></i></div>
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<span style="color: black; font-family: "calibri";">We are talking to people to help set out how the involvement of
patients and the public will contribute to the work of the BRC and local people's lives. These discussions
will shape our ambition and help make it happen.<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri";">About Our BRC</span></b><span style="color: blue; font-family: "calibri";"> (CONTEXT) </span><i style="mso-bidi-font-style: normal;"><span style="font-family: "calibri";">BRCs provide a vital link between the
health services and local patient need that may be different across the
country. The way patients and public are already involved will have a bearing
on our direction of travel.<o:p></o:p></span></i></div>
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<span style="font-family: "calibri";">We
want to briefly tell the local story and mark our starting point as building on good practice<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri";">What is the Strategy?</span></b><span style="color: blue; font-family: "calibri";"> (SCOPE)</span><span style="font-family: "calibri";"> <i style="mso-bidi-font-style: normal;">Involvement, Engagement and
Participation<o:p></o:p></i></span></div>
<div class="MsoNormal" style="margin-left: 1.0cm;">
<span style="font-family: "calibri";">We
will set out how these are related and reflected throughout our plans and practice<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri";">How is it being developed? </span></b><span style="color: blue; font-family: "calibri";">(PROCESS)</span><span style="font-family: "calibri";"> <i style="mso-bidi-font-style: normal;">We will ensure that we hold the
values of involvement and have a process for engaging and involving patients,
public and partners<o:p></o:p></i></span></div>
<div class="MsoNormal" style="margin-left: 1.0cm;">
<span style="font-family: "calibri";">We
will report on how we have consulted and made changes to our thinking and to the report<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri";">How does it meet with national and local
Policies and Reports?</span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "calibri";"> </span></b><span style="color: blue; font-family: "calibri";">(ALIGNMENT) </span><i style="mso-bidi-font-style: normal;"><span style="font-family: "calibri";">We need to use these reports for references on the
wider picture.<o:p></o:p></span></i></div>
<div class="MsoNormal" style="margin-left: 1.0cm;">
<span style="font-family: "calibri";">We
will do a speedy review of relevant documents to check for areas in commonality
and difference to show how involving people fits together with other reports<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri";">How are we working together?</span></b><span style="color: blue; font-family: "calibri";"> (COORDINATION)</span><span style="font-family: "calibri";"> <i style="mso-bidi-font-style: normal;">BRCs can play vital role in hosting meetings, encouraging partnership working,</i></span><i style="mso-bidi-font-style: normal;"><o:p></o:p></i></div>
<div class="MsoNormal" style="margin-left: 1.0cm;">
<span style="font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">We will explain how we are supporting the development of One NIHR at a local and regional level.</span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="color: blue; font-family: "calibri";">Where are we now and in future?</span></b><span style="color: blue; font-family: "calibri";"> (ANALYSIS)</span><span style="font-family: "calibri";"> <i style="mso-bidi-font-style: normal;">We will
carry out a simple Strengths, Weaknesses, Opportunities & Threats (SWOT)
activity</i></span><i style="mso-bidi-font-style: normal;"><o:p></o:p></i></div>
<div class="MsoNormal" style="margin-left: 1.0cm;">
<span style="font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">We will base
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public are currently engaged / involved and where we are heading</span></div>
<div class="MsoNormal" style="margin-left: 1.0cm;">
<span style="font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><br /></span></div>
<div class="MsoNormal">
<div class="MsoNormal">
<b><span style="color: blue; font-family: "calibri";">How will we know we have made a difference?</span></b><span style="color: blue; font-family: "calibri";"> (REVIEW)</span><span style="font-family: "calibri";"> </span><i style="font-family: Calibri;">Capturing the story, counting some numbers </i><i style="font-family: Calibri;">and circulating it with others will help us measure the impact </i></div>
<br />
<div class="MsoNormal">
</div>
<br />
<div class="MsoNormal" style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; margin-left: 1cm; orphans: auto; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;">
<div style="margin: 0px;">
<span style="font-family: "calibri";">We will explain how we will test out various ways acknowledging, celebrating and illustrating the ways in which patients, public and partners have changed and improved the BRC</span></div>
</div>
</div>
<div class="MsoNormal">
<b><span style="color: blue; font-family: "calibri";"><br /></span></b></div>
<div class="MsoNormal">
<b><span style="color: blue; font-family: "calibri";">We would welcome feedback so that this is developed in partnership with as many people as possible - please contact derek.stewart@nuh.nhs.uk </span></b></div>
<div class="MsoNormal">
<b><span style="color: blue; font-family: "calibri";"><br /></span></b></div>
<div class="MsoNormal">
<b><span style="color: blue; font-family: "calibri";">Tweet #publicinvolvement @DerekCStewart</span></b></div>
<div class="MsoNormal">
<span style="color: red; font-family: "calibri";"><br /></span></div>
<div class="MsoNormal">
<span style="color: red; font-family: "calibri";">Derek Stewart is the Interim Director for Patient Involvement at Nottingham BRC</span></div>
<div class="MsoNormal" style="margin-left: 1cm;">
<br /></div>
<div class="MsoNormal" style="margin-left: 1.0cm;">
<span style="font-family: "calibri"; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><br /></span></div>
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