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Science historian and Guardian science blogger, Vanessa Heggie (@HPS_Vanessa) has written a fascinating piece about how AIDS activists among others changed the way we run clinical trials and persuaded researchers to adopt new methods.
That’s certainly the history lesson passed down to me as Chair of INVOLVE by previous members. They will tell you that, before we ever talked about definitions, standards, impact or, rather bizarrely ‘what is a patient?’ it was protest and a sense of injustice that drove patients to clamour for change and hammer on closed doors. They will also tell you that our very own Medical Research Council (MRC) was one of the organisations with doors firmly closed and drawbridge raised.
This year, the MRC has been celebrating its 100th birthday. Like every centenarian it will have got a telegram from the Queen saying:
“I am so pleased to know that you are celebrating your one hundredth birthday this year. I send my congratulations and best wishes to you on such a special occasion.”
If I were President I would add a ‘PS:’ But you need to do more public involvement if you want another telegram plus some birthday money next time.
The MRC is a curious organisation when it comes to public involvement. I am in touch with a great many MRC colleagues whose commitment to it is palpable. As I go around the country, patient and public friends are often fulsome in their praise of MRC trials, how they have been run and how they were treated as participants. In October, the MRC Clinical Trials Unit, – a world-class centre of research excellence – held a workshop to discuss how to strengthen public involvement in clinical trials in the future. It is important that we support and encourage such activities in order for them to grow.
But, step closer to its HQ, and things become that bit more hazy. In fact, befuddlement might be the best word to describe its corporate response. Imagine people coughing and shuffling papers on their desk when asked a difficult question and you have it about right. Fact is, they just don’t get public involvement or perhaps even ‘the public.’
The disjointedness between this corporate persona and its more streetwise operational self hit home to me when I viewed their new 2014-2019 strategy ‘Research changes lives.’
This document was published last week. The second of its strategic aims is entitled ‘Research to people’ and this has three objectives including one on ‘Engagement: To enhance engagement and communication with our scientists and partners, policy-makers and parliamentarians, and the public.’ What that means to the cynical part of me is that the MRC remains wedded to the notion of talking ‘to,’ if not ‘at,’ the public rather than taking a more courageous step to involve them in its decision-making.
The MRC has struggled with the notion that people who are not scientists might have something useful to contribute for as long as I care to remember. When I became chief executive at the Association of Medical Research Charities (AMRC) and met its then chief executive, Professor Colin Blakemore, it was clear that engagement was the thing. That meant raising public awareness and understanding. No more, and no less. Professor Blakemore did awareness raising – and does it – very well indeed and he should be applauded for it. It has never really moved from this position since.
I did experience a glimmer of hope some time ago when it was going through a revamp of its committees. But, alas, I was to be disappointed. Its Ethics, regulation and public involvement committee contains many ‘good eggs’ who I admire greatly. But they do not constitute a patient and public forum who could inform and shape the MRC’s decisions and work based upon people’s lived experience of research – whether as participants or interested members of the public.
The thing is, like many old institutions with cultures stronger than their constitutions, the MRC is a good egg that simply likes its ‘good eggs.’ It is attracted to status and titles. And that means neither you nor I, I suspect. So while its doors may be ajar compared to two decades ago, they are also wooden and heavy and cumbersome. That means they are likely to spring back and do you and I an injury at any moment.
That’s a shame because it overshadows the excellent public involvement work being hatched ‘out there’ by MRC staff in their respective field. They’re the ‘good eggs’ in my book.
One of my highlights of last year was judging the ‘Access to Understanding’ science writing competition. And I didn’t event win it!
Well, the good news is that it’s happening again and the 2014 competition was launched this morning. The less good news perhaps – from the point of view of entrants anyway – is that I am a judge again. But, luckily, we have recruited a few more lay people to the judging panel as well.
The serious point about the competition is that it is about recognising the importance of good plain language summaries as a key tool in communicating science and that the writing of them is a skill to be celebrated.
If you click on the poster below it will take you to the competition website. Closing date for entries is 10th December.
Here’s the official written blurb.
“Access to Understanding is a successful international competition run by Europe PubMed Central, about to enter its second year, where entrants are invited to write a plain English summary (up to 800 words) of a research article. The competition seeks to increase public understanding of science, and to encourage researchers to consider public engagement and translation of complex cutting-edge contemporary research as an integral part of the research process. In essence, we want to raise awareness of the importance of bridging the gap between open access and broader understanding of the fruits of research.
The competition is open to all current biomedical and life sciences PhD students and post-doctoral researchers with a maximum of six years experience following completion of their first PhD, worldwide. The winner gets their entry published by eLife. For more information about the competition, please do get in touch, or see the competition details here.
Prizes will be presented by Professor Sir Mark Walport (Chief Scientific Advisor to the UK Government) at a prestigious awards ceremony at The British Library in London on 24 March 2014.
The winning entry will be published by eLife. The winner will also receive an iPad. Runners up will receive an iPad mini (2nd place) or a £100 Amazon voucher (3rd place) and, at the judges’ discretion, may also be published by eLife. All shortlisted entrants will have tickets reserved for them at the awards ceremony.”
Sometimes it is the lot of the blogger to feel like the producer of ‘Have I Got News For You.’ One’s research can taken you to all sorts of places you didn’t know existed. Then again it can also turn up some gems.
This morning I blogged about the WHO report on medicine priorities and its call for better tools for evaluating public involvement.
Then, this evening I stumbled across this short article from ‘Optometry Today.’ It reports the findings of research conducted at Moorfields Hospital and published in the British Journal of Ophthalmology about the benefits of public involvement as seen from a patient perspective.
A range of benefits are reported by patients, it says, including increased patient satisfaction and confidence in their care. Health professionals also report educational benefits.
Haven’t been able to lay my hand on the original paper yet…
NIHR Clinical Research Network Survey
Patient and Carer (Lay) Involvement in Research: Your Experience
The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers.
You should take part in this survey if you are a patient or carer (lay person) who is involved as a research partner or collaborator at one of the Clinical Research Networks.
We will produce a report summarising the findings from this survey. We will use the information that you provide to encourage more people to get involved in research and to improve the experience for all individuals. We will not be identifying individuals by name in the report.
If you are interested in taking part, we would like to hear your views. Please click here to complete the online survey:
The deadline for completing this survey is Friday 26 July 2013.
I make no apology for being a little bit obsessed by plain English summaries of research this week. Events have conspired to make it this way.
So, what did NIHR do when faced late last year with rising concern among academics, researchers, patients and the public about the poor quality of lay summaries? It commissioned INVOLVE – its national advisory group on advancing public involvement in research – to inquire into the matter and make recommendations. That’s what.
INVOLVE’s report – the outcome of that inquiry produced with the excellent TwoCan Associates – appears on-line today. It makes sensible proposals for the structure, content of, and guidance given to researchers on, what is says should be called ‘summaries’ (not abstracts). Also on how to improve adherence within organisations. For instance, INVOLVE says that production of a high quality plain English summary should be an NIHR principle and condition of funding.
I am very proud that INVOLVE was asked to lead this work. There is much to do to make sure its recommendations get taken up by NIHR but also by others funders. But I do believe that – given the evidence gathering exercise it did in the first instance – it has succeeded in establishing a good starting point for NIHR. I hope that other funders will also follow its lead.
From this month onwards, while discussions continue within NIHR about the report, we will not be resting on our laurels. We will be adding more content and helpful advice to a special part of the INVOLVE website. So watch this space.
Healthtalkonline looking for people to talk about their experiences of patient and public involvement
Healthtalkonline is looking for volunteers to be interviewed about their experiences of patient public involvement in research design and delivery. Flyer with contact details below.
I am prone to beating up our Royal Colleges for one reason or another. But, over the last few years, I have grown to admire and respect the work of one of their number in particular – the Royal College of Paediatrics and Child Health (RCPCH).
Yesterday, RCPCH launched a new report entitled ‘Turning the Tide: Harnessing the Power of Child Health Research’ which is part progress report and part agenda for change. The College’s campaign will aim to:
- Debunk the myths surrounding clinical trials – and push for the introduction of a system of ‘opting out’ of studies designed to reduce uncertainties in treatments, rather than ‘opting in’
- Bring organisations together in a UK “Children’s Research Collaboration” to optimise use of funding for research and raise awareness of the need to strengthen children’s involvement
- Improve education, research training, and guidance for paediatricians: with the RCPCH pledging to improve research training for all paediatricians and clear routes into research careers
- Strengthen the infrastructure for children’s biomedical research in the UK by supporting the establishment of a children’s trials network for non-medicines as well as medicines studies, and children’s health sciences networks to share resources, and promote cross-institutional collaboration between paediatricians, adult physicians, and non-clinical scientists researching the early life origins of adult diseases
There’s a very powerful section in the report about what the NHS should be doing which you could read across many, if not all, other conditions.
Two additional comments. The idea of a UK Children’s Research Collaboration (UKCRC! funnily enough - see yesterday’s blog) is a good one. Quite apart from the greater co-ordination of efforts that would result, precedent suggests it will also help amplify the message (one of the points Richard Smith noted in his BMJ blog today about charities needing to work together more). The arguments in favour are given further force this afternoon by the news that donations to medical research charities are now falling (see AMRC blog). Quite simply it is about efficiencies of scale.
I’m also delighted that RCPCH and its partners are going ahead with the idea of a ‘children’s charter.’ The College seem to have developed a strong public involvement model of working and I went to one of their meetings with young people and parents a few months ago as part of the ‘Turning the Tide’ preparation work. This was an idea that came out of that meeting and I am pleased it has gained credence with the report authors including Neena Modi, Vice-President at the College. In setting out children’s rights and expectations when it comes to research I am sure we would all wish to support and applaud its development.
My thanks to the Diabetes Research Network (DRN) for sending me their report ‘Improving public awareness of clinical research.’ Clinical research networks are at the ‘front-line’ in terms of encouraging people to take part in research and this report gives a good insight into some of the tools and strategies used by DRN. Others trying to do the same thing might find the report helpful in enabling them to shortcut a few steps. There’s also an honest appraisal of the hurdles they have had to overcome and those that remain in the way.
Similarly, the National Cancer Research Institute (NCRI) Consumer Liaison Group have today posted a new report on their website called ‘Action on Access.’ This is also stuffed with case studies and learning that will be useful to many. But there are also very good conclusions directed at commissioners, Trust Chief Executives, research funders and others. While I think about it the group have also posted a report on the impact of public and patient involvement and it’s here if you wish to take a look.
On the same theme, AMRC are holding a ‘Research in the NHS’ event on 10th December. Places can be booked here. I believe I am speaking but don’t let that put you off.
Fellow blogger Jo Brodie referred me to this posting by another blogger Ann Blandford looking at how the focus on ‘do no harm’ in research regulation, disincentivises researchers such that the system ends up doing no good either. Or that’s how I read it anyway. Ann talks about the need for ‘proportionate’ regulation which is the hot topic of the day. Only this afternoon I was discussing with colleagues how public engagement strategies for recruiting patients to research can often fall foul of the different interpretations and then stipulations put on them by research ethics committees. That’s surely one for the new HRA feasibility study as announced this week.
Less than two weeks to go until the INVOLVE annual conference and the conference issue of the Newsletter is now out. Please take a look. The INVOLVE blog will be going live soon as well. We have 450 delegates attending and a real buzz is gathering about the whole event.
I noticed this in Civil Society from a few hours ago. Cancer Research UK (CRUK) – the largest publicly funded medical research charity in the UK – is reported to be launching a new identity in September to coincide with the 10th anniversary of its establishment from the merger of Cancer Research Campaign and the Imperial Cancer Research Fund. The article includes an extensive interview with CRUK’s director of marketing and fundraising, Richard Taylor, as well as a sneak preview of the new logo. Rather like the change and the thinking behind it I must say.
Actually that’s not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens next. I had a two-part wish:
- That the NHS Constitution consultation does not become a referendum but is seen as the beginning of a deliberative exercise with the public and patients.
- That the governance system which emerges enshrines the role of the public as effective co-custodians of good research.
‘Caldicott 2′ speaking notes
The public and health research
Strong public support for health research – ‘instinctive and altruistic goodwill’ towards it – emotive response not too dissimilar to that which causes people to donate to research charities. Nature of a person’s relationship changes as they begin to have direct contact. Value needs to be better articulated, however, and we need to do a better job of harnessing support.
But low awareness and understanding of how it works generally and, even more so, of particular elements such as use of patient data. Clearly need to do more to change this but not sure that ‘the fluoridation of water’ population-wide approach to raising awareness will get us very far. What happens via NHS and Trusts in the context of care much more important – see below.
I suspect people, however, would take issue with the definition of research that some suggest. Would be an expectation of delivery in terms of treatments, new interventions etc not just advancement of scientific knowledge and understanding. Real need to de-jargonise information governance debate and try to arrive at consistent definitions and terminology.
Context for people’s individual participation in research is changing. Now being framed as a ‘choice,’ as an entitlement as part of their care and treatment – NHS Commissioning Board Draft Mandate. Vision of ‘citizen-driven’ research where people are asserting this right with their doctor.
Changes dynamic. People will have greater expectations over their rights as well as responsibilities and I am not sure we have thought this through sufficiently within the research community. It’s no longer a simple exchange or gift relationship. Support is not unconditional.
Strong case for patients and researchers to begin to ‘codify the expectations’ that people can have about their participation and involvement including how their data is used. Public meetings I have done recently suggests growing frustration over things like consent and the lack of a relationship feel to their interaction. Something I am looking at in my role at NIHR.
Building on the evidence
Have been involved with a number of exercises to gather public opinion an insight into public perspectives on information governance – ‘Your medical records saves lives,’ Academy/AMS report.
Evidence is indicative of public support for sharing data and understanding of benefits but important we don’t overwork or overcook it as if it is a ‘mandate for change’ in itself. It merely gives us license to examine further with them how policy and practice could change. That is why NHS Constitution consultation so very important.
4 small points about the ‘Your medical records..’ exercise. First, people assumed their records were being shared anyway. Second, it was a deliberative exercise which enabled people to have their concerns explained away. Third, the biggest barrier to change seemed to be their GP. Fourth, in designing the leaflet people really put a premium on simple, direct information but with clear signposts of where to find out more according to their interests and needs.
Welcome the consultation. Need to take a deliberative approach to it. Important to have right mechanisms to hear and understand what people are saying, not just organisations. Also important that we involve the public in the design of the consultation, the framing of its questions and the evaluation of the responses.
Building trust – consent, research governance and public involvement
Three key elements:
Important for people to feel in control of their information and its uses. So, absolutely critical that people are clear about what is being proposed, the pros and cons of opting out, what this means in practice, how data use is going to be monitored etc. In the Facebook era it seems unwise to have a system which does not allow people to choose areas of information they are happy to share, review their decision at appropriate points and re-boot their involvement etc. Or if not, the reason why needs to be clear.
Public involvement in the overall research governance is important to getting the system right from a patient perspective and will help instil trust – patients are effective partners in ensuring good custodianship of research.
Important to have a governance system which is less about transparency and the production of data (as opposed to information) and more about the ability for people to track how decisions were made, by whom and why. Plus what is done if things go wrong.
Double whammy by INVOLVE: new resources on diversity and inclusion in public involvement, and impact on research conduct
INVOLVE has published two fabulous resources on some current hot topics in public involvement in research:
Strategies for diversity and inclusion in public involvement – this is a supplement to our briefing notes for researchers
Public involvement in research:impact on ethical aspects of research – this resource provides examples of the impact of public involvement in the ethical design and conduct of research.
Click here to go to the news page on the INVOLVE website and find out more.
INVOLVE – the national advisory group for the promotion and advancement of public involvement in research – has published its strategy for 2012-2015. See the INVOLVE website for more details.
Work on the strategy began last summer – just as I became INVOLVE’s Chair – and I am very excited about setting to work to deliver this plan over the next 3 years. Shortly, we will also publish our operational plan for 2012-2013. This will help people understand our specific priorities and aims for the year and how they fit with our long-term strategy. We will also be updating the plan regularly to show the progress we are making, including the other people and partners we are working with.
You may be interested that, in the last week or so, INVOLVE has also published an online guide for researchers on how to involve the public in research.
I was pulled-over by the police on the M25 on Sunday night. Unbeknown to me, my car brake lights had failed so that they were permanently on. Quite apart from blinding any traffic on my tail, an unwitting driver could easily have mis-read my intentions with who knows what consequences. Thankfully that didn’t happen. And by the way, thanks to the AA man who repaired them.
A few weeks ago, the Association of Medical Research Charities (AMRC) published an excellent report of the five-year audit they have done of the Association’s 125 members and their peer review practices. You can download it from their website here. It shows that UK medical research charities are as committed as ever to independent external review of their science. And it is this sector-wide commitment to peer review – to almost the exclusion of all other factors – which locks them into the prevailing consensus on the pursuit of science in the UK. For better of for worse.
But there is a statistic in the report that troubles. This shows that the number of charities that use lay people in peer review (49%) is very similar in 2011/12 to that (53%) of the previous previous audit completed in 2006/7. Have charities really become static on public involvement or am I just not seeing through the static?
Now, we have to be a bit careful here because I know from colleagues that the story behind the numbers today is quite different to what it was then. Five years ago charities tended to simply stick lay people on panels, count this as involvement and forget about them. Nowadays – as AMRC’s report and other documents it has produced shows – the role and contribution of lay people is better facilitated and richer as a result, from separate panels feeding into peer review, to developing research strategy not to mention contributing to research dissemination. AMRC’s science communication awards also bear witness to this.
But I am not going to let my beloved sector off the hook completely: there are other indicators that paint charities in a disappointing light when it comes to public involvement. For, even with the silver lining portrayed above, the figures in successive AMRC peer review audits indicate that around half of medical research charities do not involve the public in the way they decide how to apportion donor or supporter money to research. Go figure.
The recent INVOLVE/National Research Ethics Service (NRES) report on public involvement in grant applications also showed that, of those funded by charities, about one third included no public involvement and about another third had ‘ticked’ various public involvement activities as part of their study but were unable to confirm what this was in free text. In my view charities should be at the top of the leader board, way ahead of the current front-runner in the INVOLVE/NRES study which is the National Institute for Health Research (NIHR).
I also know from my work with NIHR’s clinical research networks – and local research networks in particular – that charities are certainly ready and eager to fund clinical trials or studies. But they can be less engaged in the equally vital task of securing patient and public involvement in trials, and in recruiting patients when trials open.
This whole area deserves deeper inquiry to find out what the true story is. But my hunch is that a core of charities, enlightened about their relationship with their public, have simply got even better at the task of involvement. Too many, however, continue to tiptoe nervously around the subject. Others just refuse to play ball for one uncharitable reason or another. This does science and the public a disservice.
With ever greater scrutiny of their role in society, charities must constantly demonstrate and not just advertise their unique ‘copyright’ over public support for research in this country. By involving their beneficiaries they can perform an important pseudo-regulatory role in ensuring that the way in which science is conducted – as well as what it chooses to focus on – ‘protects and promotes the public interest.’ Their supporters prove time and time again to be the best at getting the message across to fellow patients, clinicans and researchers. But most of all public involvement is a fundamental part of the charity genome: it is the impulse that urges us forward to question, to innovate, to never accept the consensus.
Don’t get me wrong, I think the charity sector is one of our greatest strengths in UK health research. That doesn’t mean though that on some things I don’t think we can do better, much better.
But perhaps I just can’t see past those faulty brake lights.
Given the concerns over the quality of care home provision in the UK, it is essential that we invest in research that will improve care-giving in these settings for the future.
The Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) have just launched a new toolkit (website) entitled ‘Enabling Research in Care Homes (ENRICH)‘ to help promote and facilitate research in care homes. The website shows how everyone from researchers to residents and their families can take part. And although the primary focus is on dementia, the guide has been designed in such a way so as to be applicable to other conditions too.
Apologies for the slow-blog week. Four days out and about made it difficult to put pen to paper…