Tuesday, 10 July 2018

Why do we, as patients, have to prove our worth?


Please note that I will be adding some pictures and making some further edits to this post in he next couple of days.

Evidence of IMPACT is increasingly being mentioned when we talk about patient and public involvement.

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?

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. 

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. 

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.


We make a real and tangible difference...

To Individual research studies
  • Enriching the reality of the research - the priorities, relevance, and value
  • Informing the design of the study - outcome measures, inclusion measures, Patient Information Leaflets
  • Improving the doing of the study - advice on where to promote and recruit, membership of trial management and even co-applicants
By talking about Research
  • Raising awareness about research in general through the Research Ambassadors initiative
  • Increasing access and provosinh more information about research 

For Patients, Public and Healthcare Organisations
  • By being Active in these changes
It is more than just making improvements to the research and doing studies.

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.

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.

We are seeing the movement of research from academia, though clinical care to being a serious patient asset.

We, as patients, should expect, seek and maybe sometimes demand more. 

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. 


Are we making a difference?

The following notes are based on a Workshop in Coventry - Impact is not just about counting things. We need the evidence in story form, photographs and videos about...

  • 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
  • Simple personal diaries asking people's expectations of being involved at the beginning of a project then at some intervals
  • Reporting of the why, what, how of the Involvement with illustrative instances of improvements
  • Preparing a simple evaluation sheet with grades to note information, knowledge, experience, confidence
  • Making a case study of a person or group's involvement
  • Booklets on the Involvement - CRUK
  • Social media summary around a particular discussion 


We must also ensure that the story of the involvement is mentioned in dissemination, on posters and in publications. 

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) 

We must see the Patients Included accreditation for every event.


Sunday, 8 July 2018

What might IMPACT look like?

What might IMPACT look like? 


This is the question I posed at a workshop at 

Coventry and Warwickshire University Hospitals Research and Development Summit 2018 

#rdsummit2018 @UHCW_RandD @nhsuhcw



The workshop was publicised as highly interactive and informative. Hopefully is was fun and safe learning with colleagues.

DIFFERENCE

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.

The question was simple: What difference might this make?

The responses varied from the principled to the practical. They speak about being more patient friendly and about making a real difference.

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.


The second task was about capturing the IMPACT. By some stroke of fortune, I had just attended the workshop led by @julieEbayley and got this lovely quote: “IMPACT is the provable benefits of research in the real world.

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.

The groups came up with some great examples of the difference involvement might make and the ways in which we might measure the impact.


Involvement in Priority Setting



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.
Patient involvement needs to be done and to show a demonstrable difference.


The IMPACT might be measured by having…

A summary of ideas offered by patients/public and how the priorities changed
An evaluation of how priorities have shifted over time from academic to public ownership

Involvement about Patient Information Leaflets

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.

The IMPACT might be measured by showing…

The before and after versions of the leaflet
Examples of where the medical jargon has been altered to make the language more relevant

Involvement with Outcome Measures

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.



The IMPACT might be measured by having…

A different focus of the actual measures (ie more meaningful, realistic, patient friendly)
Examples of the original measures compared with later version


Involvement on a Trial Study Group
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.

The IMPACT might be measured by having…

Examples of the modification of the study design which came from the patient partner
Personal account from the patient about their involvement
A separate report of the patient & public involvement throughout the trial


Involvement for a Research Open Day


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




All of these help change the culture: make research relatable; reduce the tunnel vision of academics/ clinical staff; remind us why we do research; cultivate transparency; ensures right people and right place; helps research have more impact; Inspires - provides empathy. It gives us the alternative perspective by involving the people whose lives we are trying to improve. We learn, researchers and public, as to how research effects each other.

The IMPACT might be measured by having…
A Evaluation of the Open Day with feedback from patients 
More people getting in touch and demand for the next event
Greater enthusiasm from both public and researchers















If only we had more time….

(The following notes are from the plans for the workshop which we didn't manage to get done)



LEARNING 

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.

The Q. was to be: What might patients/public learn from being involved?

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.

STANDARDS

As we define and record our activity it is important to set our involvement with the National Standards for Public Involvement. This means we can measure our activity with that of others to compare and contrast; to ensure we are effective and to improve.

Participants might like to read about these and reflect on how they might be developed.

REPORTING AND PUBLISHING

Almost all research, begin with search about what is already known - a literature review of published papers.

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.

You may want to consider submitting a document on the NIHR Involve websiteand/or producing a paper for the journal Research Involvement & Engagementjournal

Tuesday, 15 May 2018

Patient Advisory Groups (Part 3) - Purpose and Plans

PURPOSE and PLANS

This is Part 3 in a series of posts about Patient Advisory Groups - You can read the others Part 1 and Part 2


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. 

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.  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.

You can click the highlighted words to find some sample Terms of Reference from the NIHR Involve website. 

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. Once agreed it is easier for everyone to keep the meeting on track.

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. 

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. 

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.

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. 

The clearer you are about the task, the more likely you are to know if you have made a difference. It is easier to capture the 'before' and 'after' information - eg Here is the leaflet before I asked the Advisory Group.

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 Asking Thinking Questions a useful guide to help reflect and consider our effectiveness. 

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.

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)



The NIHR INVOLVE Standards

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. 

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.

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

Wednesday, 25 April 2018

What Children's Hospitals can look like.

Reflecting on a visit to Sant Joan de Déu, Barcelona Hospital where the young person is at the centre of care. The key points of my talk for AQuAS can be found here.


A view from the hill
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 Sant Joan de Déu, Barcelona Hospital. The photos they showed were inspiring. 

A few weeks ago, I had the absolute pleasure of visiting this hospital with its wonderful outlook over the city. 

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. 

with Begonia and Joana

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 GenerationR and @jen_preston1

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. 



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. 


Hello from Nottingham

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.

This is a hospital made for children and parents. Research is just what they do to make people better.




Sant Joan de Deu meets me as a person rather than forces me to fit into a medical world. 

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....”

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.


The signs throughout the hospital make sense and are illustrated with numerous outlines, drawings and cut outs of animals. 

There is forest to journey through. Cardboard trees give me the opportunity to comment.

A number of the corridors showed pictures of the many, many children who have posted pictures and thanks to the staff.

Every child's room can see out of a window (though people on the outside can't see in).

The consultation rooms and spaces are perfectly laid out to offer comfort and privacy 

There is a fabulous area where children and parents can lear to cook the foods needed for their diets.

A camera records the cook at the cooker and it is displayed on a seen for others to see and learn.


Everything is done to help children and their parents help comprehend and cope with the circumstances in which they find themselves.

Dolls, diagrams and soft toys explain, illuminate and help all of us understand. 


There is no doubting the knowledge and pursuit of excellence at Sant Joan de Deu. 

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. 

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. 

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. 


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!


And, talking on enlightened things - here is a short animation about Children’s Research from Nottingham University Trust Hospitals https://youtu.be/mPvCNGg6D0E



Monday, 16 April 2018

Patient Advisory Groups (Part 2) - From Story to Reflection (Inclusion)

From STORY to REFLECTION (Standard: Inclusion)

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.


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. 

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.

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.

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.) 

We are there to advise, to offer opinion to help 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.). 

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. 

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. 

It is vital that all Advisory Groups address equality and diversity. Part of that is advising the research team how they might engage with certain groups, communities and cultures. 

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. 

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. 

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. 




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. 

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? 

It is also about people feeling welcomed to the Group, whether they are included in the discussion and contributions are valued. 


My NEXT BLOG POST in this series about Patient Advisory Groups will look at PURPOSE & PLANS which I think falls into the Standard about IMPACT

Wednesday, 4 April 2018

The WHYs of PPI (My Barcelona Talk)

WHY do we do Patient and Public Involvement in Research (key points from my talk in Barcelona - more to come about their excellent work)


For the Agency for Health Quality and Assessment of Catalonia (AQuAS)
Jornada SARIS sobre PARTICIPACIÓ EN RECERCA / SARIS Event

In this presentation I am exploring 2 questions…

       Why is patient engagement in research important and beneficial for all?
       What works in patient engagement in research in the UK?

(You might like to read the preparatory post here. You might want to know that Catalonia are using the word Participation to cover Involvement and Engagement)

Words and meaning

This talk is about inviting patients and the public to actively participate with researchers - to help as partners in joint endeavour.

For example: To identify the research questions, to help prioritise and shape the way the research is designed, planned, delivered and disseminated.

It is about Doing WITH not doing TO!

 

WHY? A bull’s head or a bicycle saddle?

Picasso's sculpture invites us al tol see things differently and benefit from each other’s perspectives


Why are we doing this?

I have placed the key Catalonian elements as part of a continuum:

Inform            Consult          Dialogue       Co-create

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.

With a continuum, we can move back and forward from the possibly passive to the far more active, from the telling to listening, from hearing to joint endeavour. From individual to collaboration.

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.


WHY - the big themes 
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:

    §   Democratic citizenship
    §   Practical sense
    §  Public money
    §  Cultural change
    §  Trust
    §  Shared decision making

It doesn’t matter but each is a good reason when trying to persuade others.


Why – from the Actors
From ‘grand themes’ to ‘real people’, Involvement for…



§  Researchers - brings real life to the research
§  Funders - checks that money is being well spent
§  Research managers – greater confidence to recruit and retain study participants
§  Patients and Public - means helping shape the future and gives reassurance
§  Government - demonstrates tangible impact of policy decisions


Why - as a result of societal changes
The daily development of digital technologies and internet provide further reasons for change:

·      Access to Information and communication including open studies
·      Rise in patient advocacy through use of social media
·      Consumerism, human rights and higher expectations are communicated more rapidly
·      There is also less deference to authority
·      More populism and rejection of experts
 


Why - when involving patients is policy

In England, the establishment of the National Institute for Health Research (NIHR) has created a Research System aligned to the National Health Service (NHS). The insistence on patients as partners is viewed as essential and crucial.

It is NIHR Policy to require and expect patient involvement (as participation is called in England) in:

·      Development of research concepts
·      All funding calls and commissioned research
·      Grant applications and fellowships awards
·      Bids for Local Clinical Research Networks, Biomedical Research Centres and Clinical Research Facilities
·      Funding and Review Committees at national and local level
  
                (The bottom line is engage and involve or you don’t get money)


WHY - for research and researchers  (Image of the Research Cycle from Research Design Service)

All WHYs have to translate into simple SO WHATs for the actual research (That is: So what has happened as a result…). Here are some real practical improvements:

  • Appropriateness of the research priorities
  • More relevant research questions
  • Improved inclusion and exclusion criteria
  • Understandable lay summaries
  • Readable Patient Information Leaflets
  • Reassurance for Ethics
  • Value to Patients for Funders
  • Better quality of outcome measures
  • Suitability of recruitment plans
  • Informing other patients
  • Valuable insights to management, analysis
  • Interpretation of data
  • Greater spread of dissemination

Planning
These practical changes are also evidence by
  • Different culture at meetings
  • More open dialogue
  • Better funding decisions


Nottingham Biomedical Research Centre

We are writing our plans around the concept that Nottingham is Research. Our People Strategy focusses on Community, Impact and Learning


 WHY - WHY NOT?

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:


From researchers

“We don’t know why we didn’t do this before”
“Involvement just makes common sense”
“My research is so much richer”
“It’s a positive reminder of our purpose”

From active patients
“I have a better understanding of my health”
 “I know more about the latest research”
“I feel I am part of the solution rather than a problem”

From NIHR
600000 people in 2016-17
Under 30 Days to recruit 1st patient
Hospitals active in research have better outcomes
Patient Surveys - participants liked taking part


 What makes it work?
I have embedded hyperlinks

       Principles
       Policy
       Guidance and advice
       Ambassadors
       Learning & development
  
Along with resources, support and time

You also need
  • Enthusiasm
  • Champions
  • To let go
  • Authenticity



Moltes gràcies


From Dame Sally Davies, Chief Medical Officer 
“No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights.”



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. 




LINKS


During the Question and Answer section, I mentioned a couple of resources.

Laboratory and non-patient facing research (including Public Health) might find this paper of interest http://slginvolvement.org.uk/wp-content/uploads/2016/09/Lab-based-research-FINAL-10-8-16-public.pdf

Health Protection Research Units - Here is a useful Strategy document http://hieh.hpru.nihr.ac.uk/our-research/ppippe

Impact of Patient Involvement - Cancer Research UK produced this useful report http://www.cancerresearchuk.org/sites/default/files/cancer_research_uk_patient_involvement_impact_report.pdf


This post on my BLOG details many of the relevant links about Active Involvement as we describe ‘participation’ in UK