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