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)

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

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


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”

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

       Guidance and advice
       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. 


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

Health Protection Research Units - Here is a useful Strategy document

Impact of Patient Involvement - Cancer Research UK produced this useful report

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

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