Voices Raised - DiabetesUK show the way!

Great meeting to Improve Local Services Together?

I attended a fantastic event in Bradford last week where people were keen to develop and improve the connection between patient experience, care, treatment, research and commissioning. Superb resources to engage and involve the public in research and campaigning are highlighted below.

Who was there?

Over 80 people from all walks of life, different backgrounds and cultures attended. They were interested in diabetes care and wanted to make a difference. The vast majority had little or no prior engagement or active involvement with research or commissioning. They were mainly patients and carers from the local population who wanted to find out more.

This was very different from the run of the mill active involvement in research which seems to mainly attract a certain type of individual of a certain background and age.

How did people hear about the meeting?

Some had heard a radio advert, others read about it in the local media. Some had seen a poster advertising the event or had been invited to attend by health professionals and the charity.

This approach to communication, focussing on making improvements in just one medical area made it far more inclusive and open. The expectation upon the attendees was to share experiences within set questions. 

What was the meeting about?

The meeting was titled Improving Local Services Together (ILST). This is an interesting and exciting initiative run by Diabetes UK that simply does what it says on the tin. 

It was so good to see patients, carers, clinicians, health professionals, researchers all working together in the same room with the same aim. There was no apparent 'them and us’. Research was not a separate and distant relation - It was a part and parcel for good care, better patient experience and improved outcomes. 

What was I doing there?

I was fortunate enough to be invited to speak and help with a workshop at the event about how patients and carers might participate and get involved in research.

I speak, all too often, at conferences, events and meetings that are all about research. I know how to speak ‘research’ and have experience of the culture and behaviours inside the research world. 

The fact that this event was about people and their experiences made me realise just how far research has to travel to be really meaningful to the population as a whole.

Who hosted the event?

It hosted by Bradford Teaching Hospitals NHS Foundation Trust  in conjunction with the local Clinical Commissioning Group with the local DiabetesUK Support Group 

This combined approach is helpful for the public and clearly demonstrates that health professionals want to help improve patient care by understanding the patient experience.

Where and when was the meeting held?

The meeting was held at Kala Sangam Centre a vibrant community arts organisation in the heart of Bradford. Great facilities with great atmosphere and food.    

  

Registration began at 4.30 and the meeting started at 5.30pm

It was good to kick start this initiative in a central and accessible venue at a time when most people can attend. I am now following @Kala_Sangam on Twitter.

How was it organised?

Improving Local Services Together (ILST) was ably facilitated by Isla Dowds, who ensured that the main focus of the event was about the providers of health services listening and learning from patients. Isla is the Patient & Public Engagement Facilitator - Patient Experience, Bradford Teaching Hospitals and used to work for the NIHR Clinical Research Network.

A marketplace with different displays and stands   to provide support, advice, and more importantly sharing of experience, ideas and how to improve patients lives through prevention, treatment and research.

The formal welcome was from Dr Donald Whitelaw, a senior clinician and active researcher 

Alex Deveraux, Project Manager, Diabetes UK spoke briefly about the ILST project. I spoke about research and Dr Kulpana Patel and Vicky Wallace from the Clinical Commissioning Group explained why it was important for them.

All of these very brief talks set the scene for a dialogue in smaller group settings.

It was great to see the majority of the time being spent listening to people instead of the usual 'telling the public'. 

Useful Resources

Diabetes UK have a number of very helpful leaflets and guides about how to get your voice heard, how you help shape and influence the decisions they make as a charity. Care, Connect, Campaign

RAISE YOUR VOICE - inviting people to sign up to Diabetes Voices to have a meaningful and relevant say in influencing diabetes care.

INVOLVEMENT IN RESEARCH - a simple folded A3 sheet with information about being an active voice in shaping research, examples of current and recent studies that are taking place along with advice on how to donate to the work of DiabetesUK.

BRIDGING THE GAP - Another folded A3 leaflet extracted from a magazine explained about Grants Advisory Panel and how people affected by diabetes help the charity make good decisions about what research to fund.

REGISTRATION FORM - for people to keep in touch with developments in diabetes care and research. The form offers choices as to what people might be interested in doing to help make a difference. 

The Workshops

In the two workshops we ran we spent a little bit of time talking about the three elements of taking part in research studies, getting actively involved and being engaged in what is happening.

The notes and questions included…

 

• How do we stop research being scary? 
• Need to involve local GPs and hold events in the communities to make research more available
• Encourage students to volunteer to help DiabetesUK
• Build up a list of Ambassadors for research and Diabetes - using people who have been on studies to demystify and explain what taking part means
• Have information about research in all clinics
• Why was Ramadan chosen for this meeting?
• Use dieticians and other health professionals to get the message about research across

The last part of our discussions looked at how the experience of being a patient or carer might be of value to researchers to know what patients need, to help design better research and how to get the results applied to improve people’s lives. 

Anne, a researcher and diabetic even came along seeking help and advice about a piece of research with which she is involved. 

Thank you!

Many thanks to all the people who came along and to Christine Kelly, Trust Research Nurse who helped facilitate the two workshops.

Well done to the people of Bradford who attended the event. It was a real pleasure to meet you and I wish you all the best in the future. Well done to Bradford Teaching Hospitals and the Bradford CCG for hosting the event. Well done Diabetes UK. Well done, Isla!

Improving Local Services Together (ILST) is a brilliant concept that can make research meaningful and relevant to improving people's lives. The model works because it is a true partnership between the communities, research and health professionals. 

And finally

It would be good to see...

• More Hospitals and CCGs taking up this initiative
• This model being applied across many different clinical pathways and showing the relevance of research at all stages of patient experience
• The  approach being cascaded in local communities and groups using local Diabetes Voices volunteers to role out the current model and providing feedback to Commissioners, Providers and Researchers
• More researchers in attendance looking at Diabetes experience as a driver for research
• A closer relationship between local communities and research

Leadership and Patient Advocacy for Research

WHAT MAKES EFFECTIVE PATIENT ADVOCATE LEADERSHIP IN RESEARCH?

Recently, I was invited to give a short presentation at the European Society of Oncology Masterclass on Patient Advocacy in Baveno, Italy. I was a stand-in for Simon Denegri who was moving house and can only say that I hope he moves house on a frequent basis. 

During the event I spoke with a number of people including Jan Geissler, Susan Knox, Markus Wartenberg, Estella Lecointe, Bettina Ryll. Amongst others I would include are Lindsey Bennister and Roger Wilson. These are individuals who have a defined roles in patient organisations locally, regionally, nationally and/or internationally. They are all key Ieaders in the sphere of patient advocacy in research across Europe.

I am therefore carrying out my usual practice of gathering and writing my own thoughts as to what I perceive this term leadership might mean in this context. I have tried to identify some of the observable characteristics as we will need to develop others to take on such roles in the future. I am beginning what I hope will become a dialogue.

My question, therefore, is simple...

How do we empower others, from individuals to groups, to become leaders who are effective in bringing about changes in research leading to better care, treatments and services?

The question is posed as an invitation to add, comment, disagree or at very least begin thinking about what it means for your group or specific condition.



FROM ADVERSITY TO ADVANTAGE

The individuals, I have met, who are leaders for patient advocacy in research have direct personal experience of illness that has become a fulcrum and drive for action. 

They have, however, managed to create a physical space from the experience that has moved them beyond telling the chronology of their personal story. The narrative of what happened is subtly crafted into a refined and reduced summary used only when necessary to set the scene, clarify the facts or to make a point.

Their experience is a raison d'etre for helping others and not a repeated story. Their complete interest is in other people’s current experience and how they might be helped, not their own. Comment, opinion, praise or complaint about their health encounter/s is rarely mentioned.

These leaders have a strong understanding that research is an essential and integral answer to improving patient outcomes. This is especially true in the rare conditions whose work perfectly triangulates research, treatment and support in their meetings and conferences in a way that many others would love to achieve.

I am always struck by the external calmness and assurance of these individuals yet in more quiet conversation there is an internal impatience and steely determination to make a difference. These leaders in patient advocacy have a strong sense of purpose to advance their own group / organisation yet build a strong interdependence with like-minded others.

It may seem inappropriate to some but I would suggest that we attempt to create an advantage for others from what happened to us. By that I mean that we draw upon experience to advantage and not ‘take advantage’.

From ADVANTAGE TO ATTITUDE

This leverage of advantage encourages, I believe, an attitude that is forward-looking and mostly positive. A manner is adopted that allows these leaders to be apparently comfortable in many different settings - patient communities, health professionals, academic and clinical leaders to departments of health and government representatives and ministers.

Leaders adapt to assimilate within these settings and promote dialogues whilst remaining clear about their role and thereby retaining a certain distance. They are willing to join the dots at different levels and in different places, learn and translate the information elsewhere.

There is a desire to find how to be effective and add value to research. Inquiring minds and reflective thinking are evident in the use of questions and the comments they make. These leaders listen and learn and are unfraid to express an opinion even if it is uncomfortable to others.

In many respects my own experience gave me a freedom to express my views. I felt was less encumbered and concerned with what others thought and more able to live life to the full. The change in attitude changed the way I behave.


From ATTITUDE TO ACTION

One of the strongest characteristics I have observed, particularly for effective patient leaders in the context of patient advocacy is that they get on and get things done.

Policies and strategies are a means to an end not a laborious and long drawn out process. They get to the point quickly to make a difference for others even when the change takes a long time. Partnership working is normal yet does not detract from completing tasks. Difficulties are to be addressed, overcome and challenged to find solutions not an excuse to give up or do nothing. Websites, emails and other forms of social media are used to communicate with a broad variety of people.

These leaders act as catalysts to bring together senior academic and clinical researchers with scientists, patients and their carers. The meetings I have attended especially for rare diseases are about knowledge AND experiential transfer and not about information giving.

These are people who ask questions that invite people to find a solution. The use of confrontational questions and statements are used rarely and only after significant and lengthy dialogue.

There is strong evidence of the use of transferable skills, knowledge and experiences from competences and success developed in other fields of personal and professional experience. The leaders appear to translate an issue into another context to help interpret meaning or help others understand.

I have often thought that my experiences as a teacher supporting challenging young people was a good background. Behavioural change is as important for the school staff as it was for the young people and lies at the heart of developing a better relationship between experience and expertise.

So, what are your views? What do you think we should be doing to grow 'patient leaders for research' for the future?

Developing a Charter for Research

The following notes represent some very initial thinking and will probably go through major changes. 

The NIHR Clinical Research Facilities (CRF) held its 10th Annual Conference in Sheffield (Twitter #crfconf14). 

I was invited to give a very short presentation about the work in the Clinical Research Network and to consider how we might move towards a Charter for Patients.  

In writing these notes I decided not to start from the 'patient, care and public involvement' perspective. I have chosen instead to think about improving research and a set of principles that we might have in common. 

I found the Athena Swan website 

http://www.athenaswan.org.uk/content/history-and-principles very helpful. 

The Context

The public and clinical research working together to improve research - the policy, process, experience for the improvement of treatment, care and practice. Partnerships taking place within an appropriate, responsible, ethical and regulatory framework. 

The Principles

That research is viewed as a process done WITH the public rather than TO the public

Research is for everyone and in all aspects of its work reflects the diverse richness of our communities

Research forms a standard part of the patient pathway with every clinical encounter offering an opening to assist research. 

Research - people and environments are friendly, approachable and supportive with high quality information and advice

Patients and their families are encouraged and enabled to ask about research and find out about the opportunities to help take part and get actively involved

Patients, families and health professionals able to develop their research literacy to empower them take part in shared decision and better health

Learning, developing and sharing their understanding and knowledge of research is central to good practice and innovations

Research processes and structures should be open and transparent with choices to inform and influence

Canada Tales 5 (final segment)

Inukshuk

I received this wonderful gift from Laurie Ringeart following the workshop on Friday at George and Fay Yee The Centre for Healthcare Innovation. http://umanitoba.ca/faculties/medicine/units/chi/

For centuries the Innuit have constructed life-like figures of rock called Inukshuks, (pronounced IN-OOK-SHOOK).

They stand as directional beacons to guide travellers. They have become of cooperation and brotherhood for people everywhere. 

Meerat Kaur, noticed my post on LinkedIn and suggested that I might like to the Boon Burger Shack, a vegetarian restaurant  - Excellent food!

On the way there I was walking so I asked for directions of   I asked if she was a student and her reply was that she was an 'auto didactic' - self learner.  

The Forks - This is a great market for local produce, crafts and gifts. It sits at the fork between the Assiniboine and Red Rivers,

The Museum of Manitoba

The exterior of this building hides a superb exhibition that celebrates the whole rich history of the Province.

The Museum traces the exceptional prehistoric finds through the periods of the wild bison to the railroads and the more modern history.

             
         And more Inukshuk!

The Manitoba Legislative Building is in Winnipeg and is the seat of the Legislative Assembly. The building is made of Tyndall stone which has numerous fossils embedded.

The Winnipeg Art Gallery has an excellent exhibition of 7 Professional Native Artists.   

And, I mustn't forget the exceptional Sunday Brunch at The Fort Garry hotel.

Canada Tales 4

The corner lookout post

On Wednesday evening we visited Fort Gibraltar, a replica of the settlement built in 1809 by the North West fur trading company formed by locals, French and Scots.

This structure, buildings and layout give an excellent impression of what it must have been like for those early settlers.

The main community building sits in the middle of the fort with numerous other surrounding smaller buildings.

La Maison De Bourgeois

A blacksmith is busy at work, the furs are laid out on the counters as the traders and others carry out their business. These re-enactors were dressed in period costumes and had extensive knowledge of the history, conditions and relationships of the time.

Other provisions, crafts and objects are displayed as if the fort had just been left.

A view from the parapet

Axe throwing, a meal and dancing followed.

Dinner

                           A good time was had by all.

A Research Active Nation

Simon Denegri, National Director for Participation and Engagement, National Institute for Health Research recently published his strategy paper Promoting a Research Active Nation with a bold ambition...

“Every citizen, by helping to design or take part in research, sharing their data or fundraising for a medical research charity, is contributing to a ‘research active’ nation focused on best health for all, through high quality research.”

The Policy objectives for the strategy include...

• Defining health outcomes that matter to people
• Helping to identify and deliver research of the highest quality
• Able to choose to take part in research
• Use the evidence on which their care is based
• Have a good research experience and recommending it to others

This echoes a number of the same objectives outlined by the Canadian Institutes for Health Research with their  Strategy for Patient-Oriented Research (SPOR)

Canada appears to have much more open view and even has a Citizens Academy. Perhaps we should be making a citizens academy for research in the UK?

There is no real surprise that there are so many parallels between Canada and the UK as there has been close cooperation for years.

Simon has been across in Canada a few times in the last year. His talk on Public involvement in UK health research can be found on You Tube www.youtube.com/watch?v=L_5Xr8BbEYo + Participation des patients et du public dans la recherche en santé - www.youtube.com/watch?v=7QhNywnaA-k

I shall be adding a brief history of patient involvement in the next couple of days along an outline of the presentation.

If you have any thoughts please let me know.

Tweets will be with    #capriresearch      #engagepatientsMB

Part of the Team

Notes of the Presentation at the Cancer Primary Care Conference

Thursday 12thJune 2014 - 0900 (CCT) 1500 (GMT)

in Winnipeg, Canada

Domhnall MacAuley, Associate Editor on the Canadian Medical Association Journal (CMAJ), provides his view of the presentation on his CMAJ Blog.

The talk begins with a piece of music by Martyn Bennett - a Scottish Canadian who died from cancer when he was in his thirties. Appropriately it comes from his album Bothy Culture.  A bothy is an open access buildings providing shelter from the snow and storms for those people from all backgrounds who are keen to climb mountains in Scotland.

The presentation set out to describe the vision and benefits of involving the public in the research process in England; list the practical challenges that have been encountered; offer an approach to reach agreement between researchers and public participants on context, purpose, impact and benefit; to signpost and use resources available to researchers and public to form these partnerships; and help people to be committed to enhancing patient participation in the process of primary care research

Some pictures of the Winnipeg Jets ice hockey team illustrate that we want to be part of the team and clarify the differences between Participation - Involvement - Engagement

Participating in research being akin to supporting the team - a sense of hope along with your consent, involvement being part of the team - in amongst the players and engagement being akin to just receiving the fanmags but not getting to the game. 

Engagement in Canada is more akin to how the UK would describe active involvement.

Involvement is becoming an increasing agenda many in research organisations from governmental to pharma companies. 

The UK Research Excellence Framework is requiring universities and all research to address IMPACT. The guidance talks about the need to demonstrate reach and significance. 

Technology & Social Media are also helping to transform the landscape. 

It means that involvement is becoming more of a way of life rather than just a tick box.

A recent research project in the UK, has produced a Public Involvement Impact Assessment Framework (PiiAF). This has identified 5 key normative values for active involvement as being: Ethics, Action/Change, Accountability, Rights and Empowerment. 

These concepts are a helpful contribution to help us think of the bigger picture when we are working together on individual studies, in governance and policy making.

The involvement in cancer research was helped enormously by a strong patient involvement at local services level. The National Cancer Research Networks were in same geographical configuration. The Initial push was by women with breast cancer and there was a pull by Departments of Health and some leading clinicians. It has increasingly become part of policy statements and is enhanced by the National Cancer Research Institute (NCRI)

It has taken over 20 years

The changes brought about by members of the NCRI Consumer Liaison Group have been...

• From influencing government policy to the strategic governance of cancer research.
• From shaping research questions to study management and dissemination.
• From setting up partnership groups to working across Europe.
• From enquiring about research to helping others to learn.

Newer organisations, such as the Independent Cancer Patient Voice (ICPV) have taken learning and development for the public to a new level with their courses on understanding cell biology.  

Much of this has been done without any written vision. We did it because it seemed right and we just got on with the task.

Simon Denegri, National Director for Patient Participation and Engagement, National Institute for Health Research in England has recently published his strategy for Promoting a Research Active Nation

“Every citizen, by helping to design or take part in research, sharing their data or fundraising for a medical research charity, is contributing to a ‘research active’ nation focused on best health for all, through high quality research.”

Promoting a Research Active Nation - NIHR Strategy for Participation and Engagement 

Why is involvement important for cancer and Primary Care research?

• Science - precision based treatments will increasingly involve patients getting or not getting on studies. They will turn up asking questions
• Relevance - clinicians in primary care have a better understanding of what is appropriate for patients in the context of their families, homes and communities. The research can be more appropriate.
• Demographics - the increasingly ageing populations will bring co-morbitities that primary care needs to address
• Financial - less money about so more important to ensure research meets patient experience and actual need
• Relationships - I believe it is far better to have conversations about research with your Patient Partnetship Groups in General Practice than talking about the reception area. Research provides a distance discussion
• Shared decision making - people I have met in research along the way seem to have more meaningful discussions with their health care professionals
• Better health - Increasingly I hear patient reps, advocates talking about a far greater understanding about their health and wellbeing.

Involvement is becoming a worldwide movement. 

I have posted a brief summarised history along with some information about what is happening in different countries. Please let me know of any others.

Involving cancer patients and other community members in helping us steer the development of this research has been so essential that I have no hesitation in saying that it would have been professionally negligent and incompetent not to go down that track. 

We invested two whole years in trying to understand the issues from their perspectives and I think we have avoided falling into some big black holes as a result…………

Professor D’Arcy Holman, Chair in Public Health,  University of Western Australia

The challenges to involving people can be 

• Expectations - make sure that people's are clear about what to expect of each other
• Advice and support - ensure that you have identified some people or websites to help
• Resources - find some pump priming money before research funds are approved
• Time - only agree to do what you can. Better to achieve something simple
• Attitudes - you have to allow time to build trust

Some Practical Advice

• Plan the meeting - think about how the patient is feeling
• Choose a neutral venue - hospitals and clinics bring back memories
• Think Hospitality - a cup of tea and a biscuit
• Offer to pay Out of pocket expenses 
• Say Thank You
• Results - Let people know about what has or has not happened

Plan for effective involvement by writing a few lines about the...

• Situation – What we are about & what you can expect?
• Task – What is required and why?
• Action – What needs to be done by when?
• Result – What difference to the research, the researcher and the lay person?
• Knowledge – How is this been shared with others?

                             …we are a simple S.T.A.R.K. reminder of purpose

The public can also help to raise awareness to improve access to research studies.

For example the International Clinical Trials Day held around the 20th May each year - please add your pictures and stories on Facebook 'NIHR OK to ask'.

Also mentioned the Mystery shopper and the UK Clinical Trials Gateway 

Penultimate slide was on sources of further information

Canadian Museum of Human Rights

The final slide was a picture of the Canadian Museum of Human Rights that is due to open in Winnipeg in Sept 2014.


Accompanying the picture was the simple question: 

Should asking about research 
be a human right?