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This Saturday 24th February Join Dementia Research (JDR) celebrates its third birthday as a fully functioning service where people can register their interest in participating in dementia research.

I am very proud to have been a small part of the JDR story. I Chaired the Lay Champions Group (see below) at the very beginning of the site’s development and did a few other things along the way. Others have done a whole lot more not least it’s Champions (more of them later). Here are a few public involvement memories, factoids, and current info I thought you might like.

10: Join Dementia Research was formally launched as a service in 2015. But it started life some time before that as a project called RAFT (I am sure it was called other things too). Keeping it afloat was never in doubt! All of the crew survived. Some in better shape than others.

9. From the very beginning and at every step of the way Join Dementia Research has involved people with dementia and carers in its design and development. From governance to the tech stuff, they helped with everything. Therein nailing the myth that some things are just too complex for ‘ordinary’ people to be part of. Here’s a blog from early 2015 in which former carer, Susie Hewer, talks about her involvement. Susie has a great blog of her own by the way called Extremeknittingredhead

8. The very first meeting of the Lay Champions Group took place on 9th October 2012 in Room 7 at Friends Meeting House opposite Euston station. The notes of the first meeting conclude with this bullet point: ‘The Group is very enthusiastic about the Register, and its aims to put the patient more in the ‘driving seat’ for research opportunities.’

7. By my calculation, on average 8 JDR volunteers a day have been signed up to dementia research studies since it began. Here’a a good example of how JDR helps get people into trials faster, easier. I think we can safely say that the expenses and reimbursement we paid the 12 people who attended that first meeting and the others who were involved in the early days has been paid for many times over. If you look at an extract of the priorities and key issues it identified at the beginning, we’ve done pretty well together to keep them in mind and address them well. These are some of the other bullet points from that meeting:

6. The very first people with dementia and carers to be involved in Join Dementia Research were called ‘Lay Champions.’ They didn’t do any laying about, that’s for sure. I seem to remember Sue Boex and Roger Kline (another two Champions) attending a lock-in to work through the details of the site in all its complications. To this day they help to spread the word as well as make Join Dementia Research the best it can be. Perhaps that’s why we now call them Join Dementia Research Champions! Here’s how you can become one.

5. Like a lot of brilliant things in life Join Dementia Research became possible when people started to talk to one another. JDR is brought to you, me, us by a partnership of the NIHR, Alzheimer’s Research UK, Alzheimer’s Society. Alzheimer’s Scotland and people with dementia and carers. The charities don’t just help to promote it they also run helplines for people who have questions about Join Dementia Research. A host of NHS, public and commercial organisations now use JDR.

4: Speaking about the aforementioned Join Dementia Research champions, some of them have become best-selling authors! They were always hot on Communications and helped us come up with the JDR name in January 2014.

3. Join Dementia Research is not just a website you know. Oh no. Oh no, no, no. Recently it has been piloting kiosks in pharmacies where you can sign up while getting your medicines.

2. As at the time of writing, 32,611 volunteers have signed up.

1. It’s open 24/7 and you can sign up here today. Go for it!

Happy Birthday JDR.

So, to cut a long story short, the European Union (sigh) is developing its next framework programme for research and innovation (R&I) ( to be known as FP9). Cue lots of consultations and papers being submitted on what FP9 should look like. I was taken with this statement in one such submission sent to me by The Swedish Advocacy Platform which consists of some 50 Swedish organisations and individual researchers involved in the field of science and society, and gathers Swedish expertise in the area. It states that its aim is to ‘ increase Swedish participation in the ‘Science with and for Society’ (SwafS) programme, increase awareness of SwafS related dimensions in the R&I process, and to increase the RRI embedding in Horizon 2020 and FP9.’
The Section is headed ‘Engaging, Involving and Mobilising Society and Citizens.’
The Open Science agenda cherishes both enhanced accessibility to results and publica- tions, and a porous interface between science and society at large. e research and innovation community needs to understand, value and strive for a mutual exchange with non- academic actors and audiences.
FP9 should ultimately deepen our knowledge and under- standing of processes and transdisciplinary activities that bridge science, the research community, stakeholders and the general public. It should also invest in lowering the thresholds for participation and in creating incentives for a fruitful exchange between sectors. e active involvement of societal ac- tors in co-designing and co-creating research and innovation would foster research excel- lence, promote the impact of investments in science, and help to build public understanding and trust in science.
In policy discussions, there is much emphasis on taking in the perspective of the citizens, involving and collaborating with them – and reference is being made to a growing divide between the public and decision- makers. From our perspective, the science- society relationship needs to be further strengthened. Mainstreaming RRI in FP9 should help in this respect. However, there must also be a dedicated programme – with its own budget line – for research on these issues, just like the current Science with and for Society programme. Such a programme would help us to increase our knowledge of how citizens understand, react to, interact with and sometimes reject scienti c knowl- edge. Indeed, there are many actors already involved in Horizon 2020 that can contribute to the design of the science-society interface, and ongoing projects under the SwafS pro- gramme which target involvement of societal stakeholders should be drawn upon in the development of FP9.
One way, among many, to achieve a true involvement of citizens is through citizen science, which is, quite rightly, high on the EU research policy agenda at present. It is important not to equate citizen science with public engagement (public engagement be- ing broader), but citizen science o ers huge potential to engage individual citizens in the co-design and co-creation of research. e Platform strongly favours a multi-layered conception of citizen science that goes be- yond pure data-collection and fully captures the di erent functions that citizen science can have3, i.e. contributory science, participa- tory science and extreme science.
The full document can be found here: https://swafs.se/wp-content/uploads/2018/02/201801-VA-Swafs-FP9-Position-paper-final.pdfhttps://swafs.se/wp-content/uploads/2018/02/201801-VA-Swafs-FP9-Position-paper-final.pdf

Calls for more health research funding on this or that condition is the one issue where I have seen sympathy within Government decrease over the years: in inverse proportion to the growing number of campaigns by charities, patient groups and others calling for more cash.

Lung cancer and mental health are two conditions where the case for more research funds has been made vocally by leading charities in the last few weeks. Few will not feel sympathy for the causes or the arguments made – Ministers and officials included I suspect – and charities and patient groups have every right to make them. Indeed, some might argue that any self-respecting charity would not be doing its job if it didn’t call for more cash. It’s just what they do isn’t it?

But in my experience, and for a variety of reasons, such campaigns now struggle to gain much momentum within Westminster and Whitehall. And it has less to do with austerity and finite budgets than one thinks.

As a Minister looks through her/his Ministerial red box late at night and comes across details of the latest campaign a number of considerations come into view: Is it really about the money – what are the other solutions? Is the field developed enough to spend more money even if it had it? How can we be sure the research funded will be the very best? Are there not other areas of research we fund which are relevant but they are just not badged with the condition name? If we give into this demand won’t it open us up to many more such calls? Is it just a fundraising ploy?

Charities and patient groups might view these questions as a rejection of their argument. But perhaps they should actually see them as an invitation from Government to enter into a more constructive dialogue which is less about the money and more about the ‘How.’ ‘We hear you,’ is the message from Government ‘but let’s stop this shadow boxing over money we don’t have. Let’s talk about how we might grow research in this area together.’ Where this is happening – dementia, mental health for example – I think the signs are promising even if the jury may still be out.

At the same time, Government could be doing more to engage and help people understand how research funding is spent and how such decisions are made. For a number of years the UK Clinical Research Collaboration has published a Health Research Analysis of how yours and my taxes and donations are spent by the main public funders and a large number of medical research charities. The last one was published in 2014 and you can find all the reports and some tools to analyse it on a new Health Research Classification System website here.

It’s a meritorious site, but a site for nerds nonetheless. It feels like a missed chance to engage the public in how research money is spent and involve them in future decisions. Like the City of Pittsburgh in the United States which has just launched a range of tools on its website to help people understand and think about how they might apportion tax receipts on services. Or the Dutch Government which has involved people in setting a national research agenda (thanks to Imran Khan at Wellcome Trust for Tweeting that particular report) which they then feel ownership for and will hopefully not be seen to be dominated by specific diseases or conditions.

Such is the culture of the UK health research system that, in spite of greater transparency about funding and where it goes, the debate remains stuck between endless calls for more money (which betray a naive assumption that there is a committee or person who is slicing up research funding like a cake) and a reluctance by Government to involve its citizens more actively in the debate about what it should fund, how and why?

It is a charade that serves no one’s interests well.

It is a hundred years today that women won the right to vote.

I for one enjoyed this morning’s special edition of BBC Radio 4’s Today Programme from Westminster.

My only regret was that Barbara Castle – my all-time political hero – was not one of the ‘most influential’ women of the last 100 years you could vote for in their poll.

Reflecting on this morning’s programme, I feel there are many parallels and learnings that public involvement can take from the suffragettes and their struggle.

Public involvement in research is a movement whose ultimate aim is to gain decision-making rights – voting rights – in the field of science. It is about breaking down the way that power is distributed and used in science. We should never forget this – however much people try to hide it behind engaging finery or the uniform of participation.

It would be disingenuous to pretend that this use of power doesn’t have anything to do with the fact that, until recently, men have dominated science, its attitudes and culture. Or that is has nothing to do with the fact that the leadership of science institutions and organisations has been predominantly male, white and middle-aged with all the associated hierarchies that means.

I have seen patients and carers belittled, patronised and, yes, sometimes verbally harangued for speaking out or simply questioning the prevailing view in a room full of the grey-suited. It still happens today – only more subtly but no less harmfully.

And, personally, I think it’s no coincidence that, when asked by the BMJ in a recent interview, who the most influential doctors had been in my career I chose two women – Dames Sally Davies and Carol Black – principally because I had seen them actively involve patients in their decision-making. The experience of being excluded is a powerful unifier.

A generalisation? Am I going too far? You are perhaps right. Thankfully things are changing. But I sense that I am treading on an agenda that I am ill-qualified to comment on, and on a day of celebration.

So here’s another – I might as well dig myself deeper into that hole mightn’t I!

From my experience of speaking at many public involvement meetings, I would say that women outnumber men in public involvement meetings by at least 2 to 1. I am not aware of a study of the reasons why this is so, but I am sure we might conjecture why. Most of the PPI leads in the NIHR are women. All the Directors of INVOLVE since it started have been women and it now has Tina Coldham as its Chair.

It is the fashion these days – me included – to talk about this community profile as if it is a bad thing. We need diversity! We shout. And so we do.

But shouldn’t we actually celebrate the role of women in the public involvement movement; the leadership role they have played in changing the culture of research? After all, I shudder to think where we would be without their activism.

Simon Denegri
Sent from my Work iPhone
You can also find me at:
Twitter: @SDenegri
Blog: https://simondenegri.com/

James Lind Alliance Priority Setting Partnerships (JLA PSPs) are arguably one of the  most successful initiatives in public involvement in research in the UK over the last 10 years.

They are the ‘go to’ methodology for defining patient, carer and health professional priorities in research; particularly for charities and patient groups who see them as an opportunity to change the research agenda.

From the first ‘PSP’ in asthma in 2007 , the method has now been used to look at treatment uncertainties across a massive range of conditions.  59 had been completed by the end of last year.  Over 30 are on the way.

14 PSPs were completed last year compared to 7 in each of the previous five years. Rarely does a day go by without me having a conversation with someone thinking about doing one.

Now they are being used to identify priorities for other issues like adult social work.

The most recent PSPs have been in Type 2 Diabetesscoliosis, Frailty (Canada), Common conditions affecting the hand and wrist, Neurodevelopmental disorders (Canada again), 

They are one of the UK’s most successful exports in public involvement with the method being used in Canada (see above), Australia, and the Netherlands to name just a few countries.

Last year the JLA PSP community – all those who have been innovators behind the name – came together to celebrate being 50 not out and to think about the future. The excellent report of that discussion can be found here.  My personal headlines from reading the report would be as follows:

  • The method is robust and sound. Those who wish to tinker with it do so at their peril.
  • JLA Advisers – those who guide people through the process – are worth their weight in gold.
  • The work to bring more clarity and provide improved guidance on the JLA method will never stop.
  • There is a recognised need for guidance on how to turn PSPs into funded research – the voices and stories of those who have done will be increasingly important.
  • An international network of ‘PSP-ers’ can only be a matter of time.
  • Open access to the data collected through JLA PSPs is not a pipedream. Watch this space.
  • The community of interest that had built around JLA PSPs is passionate, committed and a force to be reckoned with. We are lucky to have them.
  • With 85% of research being avoidably wasted, JLAs could never be more important.

Read and enjoy.  And if you are thinking of doing a PSPs here’s the website.

 

Without wishing to open old wounds, one of the most miserable political decisions tangled up with Brexit was the denial of the right to vote in the referendum to so many young people whose future is at stake.

Even if I could be persuaded about the insurmountable legal problems of giving young people under the age of 18 the vote, it says everything about the lack of creativity in our political system that young people of 12 and above could not have been given the chance to vote in some non-binding way ahead of the referendum so that at least we knew how they felt.

I say this because one of the strange omissions from today’s Royal College of Paediatrics and Child Health report and broad-side across the Government about the state of the nation’s child health is the lack of a cohesive statement about empowering young people as one of the solutions to the picture it paints.  Strange, because this is a College which has done such great work to involve young people and persuade others to do the same; this includes its charter for the involvement of young people in research.

As curious is the statement by the College’s President, Professor Neena Modi, that adults should be given extra votes in elections according to how many children they have (this in an interview with the Guardian’s Health Editor, Sarah Boseley). It’s certainly headline-grabbing and has prompted quite a response from reader’s on the newspaper’s noticeboard, many of which just serve to underline quite why adults might not make such reliable voters as they think they are!

Point is, I am not sure going from a nanny state to a parent state is a worthwhile path. My sense is that my sons and the other young people I meet are way ahead of many adults in their knowledge, concern and willingness to do things differently to improve the world today and tomorrow.

If only we gave them the opportunity to show us the way.

That’s the challenge.

PS: By the way young people are talking about research in Europe today as we speak. #PatientsEU2018

 

 

 

The National Institute for Health Research (NIHR) together with its equivalents across the other UK nations – the Chief Scientist’s Office in Scotland, Health and Care Research Wales, and Public Health Agency Northern Ireland – has been leading the development of UK national standards to improve the quality and consistency of public involvement.

The UK–wide partnership has its own dedicated website here where you can find out more about the development of the standards over the last 18 months.  Last summer there was a highly successful consultation on a first iteration of the standards which got 680 responses.  The results of this consultation were shared at the ‘INVOLVE at 21’ conference where delegates had a further opportunity to critique, shape and strengthen the proposed standards.

With the next version of the standards expected in March – around about the time that the ABPI/AMRC are hosting their ‘Patients First: Pioneering Partnerships’ conference (see workshop) – the partnership are now looking for people, groups, teams and organisations to run test bed projects from April 2018 until 2019.

The test bed projects will be putting the standards into practice in their own working environment and sharing their learning with others. Both the fellow test beds but also the wider community.

If you are interested in being a standard bearer and running one of these test bed projects you can find out more details here (the information sheet also includes contact addresses). And the expression of interest form can be found here.

The deadline for expressions of interest is Wednesday 14th February 2018 – Valentine’s Day!