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)
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
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
I have embedded
hyperlinks
Along with resources, support and time
You also need…
- Enthusiasm
- Champions
- To let go
- Authenticity
Moltes grà cies
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.”
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
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