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The Medical Research Council (MRC) is ‘a good egg’ and that’s the issue

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.

Pens and PCs to the ready: 2014 Access to Understanding science writing competition is launched

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.

Access to Understanding 2013

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.”

 

It’s NIHR Friday – Public involvement: did the research network move for you?

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.

 

INVOLVE steps forward to change behaviours on plain English summaries of health research

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.

 

Writing competition open for entries – win an iPad and article in eLife #A2UComp

And if you already have one you can always re-gift it (to me)!  This is a new science writing competition for researchers and I shall be one of the judges I am delighted to say.
The ‘Access to Understanding’ writing competition for bioscience researchers has been launched by Europe PubMed Central and The British Library in recognition of the importance of enabling access to, and understanding of, scientific research.  The closing date is 11th January 2013 and further details including the entry criteria can be found by following the link above or clicking on the picture below.
Access to Understanding
The awards ceremony for Access to Understanding will be one of a series of events during The British Library’s ‘Inspiring Science‘ season held in March to coincide with Brain Awareness Week and National Science & Engineering Week celebrations.  If you check out the website over the coming weeks you will find details of other science-related events that may be of interest.
This also gives me an excuse to add some colour to the blog for a change other than my curious writing style of course.

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.

Royal College looks to boost child health research with children’s charter

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.

Health Research Authority gets to work on speeding-up research

So there I was yesterday afternoon,  with my biology ‘o’level a distant memory to put it mildly, speaking at the annual NIHR Senior Investigators Meeting thinking: ‘how did I ever get into this?’  The event brings together the very best of NIHR’s  researchers for an update on what’s happening across health research.  And this was mentioned at last night’s dinner and announced this morning.

The new Health Research Authority (HRA) have been given the Department of Health’s go-ahead to do a feasibility study into developing a simplified and streamlined HRA assessment for all research in the NHS.  If I have got this right, that potentially means a move away from the situation we can currently have, where NHS Trusts decide they all ought to do the same assessment before the research can get underway.  You got it, that means lots of duplication, delays, a waste of money and patients losing out.

So this would mean HRA would do the assessment and Trusts would only have to think about their ability to deliver the research, while local research ethics committees could concentrate on new issues it raises.

I’m sure that if I have got that rather crass paraphrasing of the announcement wrong, someone will put me right.

A long way to go but more radical than it sounds.

Cancer Research UK to get a new look

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.

My key points to the ‘Caldicott 2′ Review of Information Governance earlier today

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.

Choice

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.

NHS Constitution

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.

PLoS ONE study – I’d go further: poor quality information undermines rights of clinical trial participants

On my recent visit to Newcastle, my afternoon was spent talking to, and answering questions from, the public about research.  Clinical trials featured heavily.  The most common theme was their frustration over the poor quality information given to trial participants before, during and after a trial had finished.

The journal, PloS ONE, has today published a study by researchers from the University of Southampton (UK),  Harvard Medical School and Northern Arizona University (US) in which they conclude that the information given to trial participants about ‘placebos’ is often incomplete and inaccurate.  In their study they looked at 45 trial leaflets for participants.  They go so far as to suggest that the poor nature of the information provided undermines the principle of ‘informed consent.’  (Medical News Today also cover it here).

Whether it is cock-up or conspiracy that researchers fail to do this I don’t know.  But this sort of stuff really gets to me.  Why isn’t this stuff being picked-up in the trial design at the time of ethics approval? Why does it seem so difficult to get such simple things right?  Why does it need another ‘test’ or ‘trial’ to put it into practice?

The broader issue it points too is the need to codify the rights – and responsibilities! – of trial participants.  I can feel a letter brewing to the HRA.  Hence my headline.

‘Caldicott 2′ Evidence gathering session on research – ‘patients and the public’ questions

‘Caldicott 2′ is the health and social care information governance review being conducted by Dame Fiona Caldicott with a due date for completion this autumn.  The title of the review is ‘Information: to share or not to share?’

I passed by the official website today and noticed that it now has a huge amount of information on there about the review panel membership, process and forthcoming evidence sessions.

Of particular note is the fact that the panel is holding an evidence-gathering session on research on  10th July and have invited submissions on the theme.  The above link will take you to the specific page about the research theme including a comprehensive document outlining the questions on which they are seeking views. This includes a ‘section 6′ which focuses on Patients and the Public and I thought it might be helpful to cut-and-paste these particular questions below:

Patients and the Public

a. What information should patients and the public be given about how their information is used and to whom it may be disclosed? How can we ensure patients and the public are better informed about research and how their information may be used for research?

b. How can patients’ and the public’s views and wishes in relation to the use of personal and confidential data be accommodated? To what extent should patients be able to exercise control over anonymised and pseudonymised data?

c. To what extent should minority views be accommodated within systems?

d. What and how should consent and the withholding or withdrawal of consent be recorded?

e. How granular do you think the consent recording requirements need to be?

f. The UK Life Sciences Strategy has proposed that the NHS Constitution commitments are amended to reflect the presumption that:

  • data collected as part of NHS care can be used for approved research, with appropriate protection for patient confidentiality; and
  • that patients are content to be approached about research studies for which they may be eligible, to enable them to decide whether they want a discussion about consenting to be involved.

Patients will retain the right to opt out but it will remove the current requirement for consent for the disclosure of confidential patient information to researchers.

What are your views of these proposed changes to the NHS Constitution? Do you have suggestions for how this might be implemented? Do you have concerns about the ways it might be implemented?

However, I encourage you to look at the full range of questions because many of the others are of relevance.

Details of where to send evidence too can be found here.

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 Strategy 2012-2015 published

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.

 

A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming

If only petrol was as plentiful a resource as public attitudes.  There is no end to the extent to which we can mine what the public thinks about this, or that.

Occasionally a survey will hit a rich seam of information and insight.  Then again, so numerous are those who are drilling into the public mindset nowadays, that I fear the small nuggets of interest reaching the surface are not without risk.  How long, I wonder, before the mountainous scree of data and information of dubious solidity reaches such a height that it obscures our horizon?

Heh ho! We can but hope that each in turn will move us a little further forward to where we want to get too, and that none do too much harm.  Have they asked the right questions, is it actionable, can we do something with this? These are the questions we should ask of such forays into the public consciousness?  And these two surveys do take us a little bit further forward I think…

Last week PatientView published the results of a survey it has conducted of 400 patient groups on the question of: what do patients value in healthcare?  There are some thought-provoking results embedded within it.  The fact that patients rate relief from symptoms and pain as highly, if not more so, than treatments which increase life expectancy is an affirmation of an issue that has long been articulated in the patient community.  Of all the money spent on researching new treatments and interventions, how much might be better directed at studying and mitigating the consequences of illness which impair a person’s quality of life?  Or simply making those innovations whose worth is already proven work better in the field – as Richard Smith, the former editor of the British Medical Journal (BMJ) suggests in his eloquent blog this week.

This week, I went to a preview of the results of a new report by the Wellcome Trust and the Medical Research Council (MRC) which will be published online shortly, entitled: “Assessing Public Attitudes to Health Related Findings in Research” this week.

It doesn’t quite do what it says on the tin because you could take that title to refer to giving feedback generally to participants in research?  (It doesn’t happen in case you are wondering).  In fact, the report is an examination – through survey and deliberative work with the public as conducted by Opinion Health – of people’s attitudes as to what should happen if researchers and clinicans discover something that has direct significance for the health of someone involved in a study.  I’ll let you read the findings for yourself in due course as they are worth reading as at least the basis for discussion on what should happen in this tricky area.

To be honest I was more absorbed by the mood music of the audience discussion afterwards: the view expressed by more than a few that ‘informed consent‘ for patients is a myth given that doctors are often making an informed guess about diagnosis and treatment; the sense that these dilemmas are not new ones to us but that the real difference is the amount, and  pace, of research and discovery and our capacity and capability to deal with the issues on such a scale and; that there is a need to think in terms of patient rights rather than patient preferences.

The most salient remark, however, was that perhaps we have reached a point where we need to re-think the way we do research; that it should no longer be seen as something that specialists do but should be conceived as the product of an evolutionary partnership between patients and researchers.  Actually, it wasn’t so much the remark that made me prick up my ears as the fact that it came from one of the industry representatives in the room.

There is much to praise about the two studies above.  But if only I could say the same of others.  For I do find myself coming away from reading or hearing other surveys feeling that the underlying premise for them is wrong and what they show, next to useless.

If I had a ‘£’ for every survey that reputedly showed the public doesn’t understand medical research or science I’d be able to open my own version of the Wellcome Collection.   But I wouldn’t know what to put in it because the question is often put so generally that the answer can’t possibly tell me much.  What don’t they understand: it’s value, the difference it can make to lives, why it is an important part of what the NHS does, why they need to take a certain medicine for their condition? Or do you mean how an MRI scan works, or the genetics of Alzhiemer’s?  If so, that’s a bit like saying you don’t understand football because you can’t relate the off-side rule in all its glorious detail.   However, we can’t really debate this further because the question doesn’t allow us.  Shame that.  But don’t worry, it probably props up a lot of misdirected or public engagement work so that’s ok.  Actually, it really is a shame.

Perhaps we need to give the public a bit more credit, beginning with the questions we ask of them.

Have charities really put the brakes on public involvement 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.

Care Homes Research: New toolkit produced to ENRICH lives

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…

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