Speech: Public involvement in dementia research after the G8

I didn’t say all of this in this way but I think you will get the gist!

Scottish Dementia Clinical Research Network – Glasgow, 24th March 2014 The importance of public involvement in health research

Welcome and introduction

Explain the roles I have as Chair, INVOLVE and National Director – role to ensure patient and public agenda reflected in what NIHR does
Mention also role as Chair of the DeNDRoN Lay Champions Group for RAFT and the online portal for people with dementia and their carers to join research
Privilege to be asked to speak today – SDCRN been very impt Ito furtherance of research and public involvement.

Me and dementia

Personal experience in family
All roads lead to Balham…early days at the Alzheimer’s Disease Society (as was).
Many firsts at that time – 1st Daily Mail front cover, first parliamentary reception, first call from Paul Watson who wanted to follow a couple coping with dementia…Barbara Pointon, first very aggressive approaches by industry about tacrine….sharing two hours in the back of a black cab with Britt Ekland. Working with Jan Killeen and Jim Jackson at Alzheimer’s Scotland
Total spent on research by Alzheimer’s Society in the early 90s was around £100,000
That we might have a Prime Minister’s Dementia Challenge’ would have seemed inconceivable then, beyond our wildest dreams.
Undoubtedly a welcome political development and a significant opportunity – notwithstanding this the question is could we be achieving more? And how much of a role does the person with dementia and their carer have in shaping the agenda post G8.

About INVOLVE and public involvement

Brief history of INVOLVE, est. 1996 etc, leadership across NIHR, building capacity and capability behind a definition of public involvement which is about active partnership between citizens, researchers and clinicians in all aspects of research. Work across clinical, social care and public health research
Members, wider network, and then wider informal reach (i.e.71k visitors to website last August alone, average of around 35-40k a month.
Brought under the wing of NIHR in 2006 – gave us funding and stability, reflected imptnce of that principle to leadership
And the rest is history as they say. Extensive guidance to researchers and patients, leading work on lay summaries.
Mention work being done by CSO Andrew Morris to bring about a more robust foundation for public involvement in Scotland – hope you will link in and work with it.

Dementia and public involvement in research

Partnership working at heart of dementia movement – founders were carers/clinicians/researchers
in 1990s, Alzheimer’s charities, people with dementia began to pioneer what we now call public involvement in health research: QRD Ahead of its time, pre-dates even the establishment of INVOLVE
Charity sector is a late adopter of public involvement generally and it’s that more than Alzheimer’s charities far-sightedness which means they are still ahead of the game
Why is public involvement in research not more part of the dementia challenge than it is now given this?
Could we not be achieving much more than we are? Challenge we should all be setting ourselves.

Why public involvement is important?

Evidence and experience shows that public involvement can make a material difference to the quality of research in a number of ways:

1. Public involvement can help ensure research priorities are more reflective of the needs of patients and carers
Ref: History of James Lind Alliance Priority Setting Partnerships: Alzheimer’s, Parkinson’s (largest such exercises so far I believe with Alzheimer’s published late last year)
About getting a more balanced portfolio not about putting science funding to a democratic vote
Question is whether it makes a difference to what we do in the future and on that the jury is still out. ENRICH toolkit has been a very important development..
Cause, cure and care….three legs of a stool which is falling over for families and our nations because we spend less time researching ‘care.’

2. Public involvement in research leads to greater efficiency and effectiveness in the design and delivery of research
Mental Health Research Network (MHRN) study of portfolio and association between public involvement and time to target Lots of anecdotes, case histories on how it is making a difference
Needs to be the rule not the exception in how we fund and deliver in the future but the models we have seem somewhat antiquated and highly managed. Power lies in the hands of a few or the organisation and there is no challenge to the consensus Future opportunity to think ahead about needs as part of a review of area.

3. Public involvement important part of building public trust and confidence in what we do…money banked in preparation for a rainy day Health Research Authority (HRA)
77% of people said that knowing a Research Ethics Committee had reviewed a study would increase their confidence in it.
44% of respondents thought that involving patients….would increase their confidence in the study. Ipsos MORI study for HRA: 2013
http://www.hra.nhs.uk/news/2013/11/22/patient-involvement-increases-public-confidence-health-research/#sthash.x3fCMNWj.dpuf Also seen in last week’s Public Attitudes to Science survey by BIS.
The public clearly trust scientists more than most so shouldn’t we trust our public more than we do given what they say? Really welcome Prof Martin Rossor appt. But Why no patient czar for dementia?
I wonder what would have happened if there had been a meeting of G8 patients as well as world health Ministers etc?
Care.data is a prime example of what happens when we do involve people from the start of these major policy initiatives.

4. Public involvement and improving people’s access to research I am not sure what a dementia friendly community is.
I am not even sure I would like to live in one.
But I would certainly like to live in a research active one: Where people have the right to information about research they can take part in
Where people have the opportunity to take part in relevant and appropriate research
Where people can sign up to take part in research as soon as they are diagnosed if not before
Where people can access the research evidence for the treatment they are receiving Where people can know the results of research freely and openly
G8 and its aftermath should be about asserting and fulfilling the rights of people with dementia and carers as citizens in research.
Shouldn’t be 1% of people with dementia taking part in research but 10, 15, 25 if not more

Conclusion

I live on the edge of a large park in South London where, almost every weekend, thousands of men, women and children can be found taking part in sponsored activities for charities. Many of these charities are easing monies for medical research. It’s the same story up and dibs the country.
Fact is that the public have a good gut instinct when it comes to medical research and are more than willing to put themselves forward to help make it happen. Including taking part in research. Our policy on dementia post G8 should reflect this. We should be demonstrating our trust in the public by involving them as equal partners in how we promote and advance research.

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