[Aside] Though this be madness, yet there is method in’t.
If you are in some way connected to public involvement in health research then you get used to ‘the look.’
Sometimes it’s a vacant stare or a gaze falling slowly across the face like the sun going down. In other instances it’s a look of panic or sheer terror. ‘Are you mad?’ you can see them think. Then, ‘No, they’re serious and my world is about to be turned upside down.’ This, as they shift their weight from foot to foot.
Demonstrating the logic and rationale behind our passion is key to influencing these panic-stricken colleagues who have stumbled across our world for the first time. Identifying methods and methodology that will not just work for them but make research better and their lives easier is key. Refinement of this thinking and in ways that can be easily assimilated is one of the three grand challenges for public involvement.
It is my personal opinion that we are not doing nearly enough across the NIHR to learn from current public involvement practices, develop appropriate methods and methodology and then serve these up in a way which can be used easily by our friends colleagues. INVOLVE has done some fabulous work in this area not least through its invoNET programme of work and its evidence library. But others need to begin to demonstrate that they will be taking this agenda seriously if we are not to build public involvement on foundations of sand. Across the water, in Canada
The Health Services and Delivery Research Programme is currently on the hunt for future research topics (deadline, 4th December) and this may well be one route to boost efforts. In the meantime there are some studies underway which I hope people will support.
To this end, I am passing on this invitation to take part in the Medical Research Council (MRC) -funded METHODICAL study – initially, a two-round survey to help agree which methods, practices and procedures of patient and public involvement (PPI) in clinical trials should be prioritised for future research…
The notice I received says..
We are looking for people with at least 12 months experience of PPI in clinical trials within any of the following roles:
- PPI Researchers (e.g. those who conduct research into PPI in clinical trials and authors of guidance documents)
- Non-lay Reviewers of trials (e.g. professional members of clinical trial funding boards /Research ethics committees)
- Lay Reviewers (e.g. members of the public sitting on clinical trial funding boards/ Research ethics committees)
- PPI Advisors across trials (e.g. member of Research Design Service (RDS) advising others on PPI activity, PPI advisors from funding bodies)
- PPI Contributors (e.g. patient representatives, research partners in clinical trials)
- PPI Co-ordinators (e.g. working for a Clinical Trial Unit (CTU) or research network to coordinate PPI activity)
- Chief Investigators, trial managers and other researchers/staff who plan/oversee PPI in trials
Each round of the online survey will take about 15-20 minutes. Round one involves scoring the importance of a list of research topics on a scale of 1-9. About two months later you will be invited to complete round two, where you will be asked to review a summary of the survey responses and given the option to change or keep your original scores.
This type of survey is called a Delphi, and is a way of finding agreement amongst a group of people. To ensure the results are accurate it is important that as many people as possible complete both rounds of the survey.
Round one will be available to complete until Friday 11th December.
Some people who complete the two-round survey will be invited to a meeting in Liverpool, at which the results will be presented and discussed to achieve a final agreement of the research priorities. You do not need to be willing to attend this in order to complete the online survey.
More detailed information about the study is available in the attached document.
The survey can be accessed from www.methodicalstudy.uk
We would appreciate your help with the study. Also, if you think there are any persons or networks that this might be relevant to we would appreciate your help with the dissemination of this email.
The Medical Research Council (MRC) has published a refreshed communications and engagement strategy.
There is a section on public involvement on P12 of the document which is the fullest narrative I have seen of their corporate intentions around this aspect of working in partnership with the public.
It is a good document and important to have in the public domain. But I wish the public involvement part had a bit more ‘oomph’ in making a stronger commitment to involving the public in strategic and operational decision-making by the MRC. Also that it appeared earlier in the document and as part of the main strategic aims.
That might help to counter the views some people hold that the MRC’s default way of working with the public is to broadcast high quality
information. For the fact is that there are many excellent examples from the root and branch parts of the organisation which demonstrate how its researchers increasingly see what they do as a joint venture with patients and the public.
The MRC Clinical Trials Unit at UCL has, for instance, produced a set of stunning new videos about all aspects of public involvement including this one.
The strategy does these activities a slight disservice by underselling their importance to the overall strategy of the MRC. However, it does mark a degree of progress.
[This post is on the ‘asides’ pages where I tend to post short pieces. My full posts are on the main pages as usual]
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.
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.
I was alerted to this piece by the excellent MRC Policy Watch bulletin. Great, that looks interesting I thought – a BMJ article about how research papers could be made more readable and interesting. Opening up research to the masses is what I’m all about. Particularly when the strapline is so good: Why do scientists write the sort of tosh that they do?
So I clicked and I got that sinking paywall feeling when it asked me to subscribe or pay for it. Indeed, a full whopping £24 for the day just to read the one article – that’s three Waitrose curries for two. Is the irony of this not lost on the BMJ I ask? Particular when it’s really an opinion piece like this rather than an original bit of science.
Enough already! As they say.
As an alternative you might try the latest MRC Network magazine which you can find here. And I’m not saying that just because there’s an article by me in it about collaboration. Oh, ok then, I am.
So the Commons Science and Technology Select Committee has this morning published its latest report about the building of the UK Centre for Medical Research and Innovation (UKCMRI) in London. THES has a report here.
The Committee seems rather oddly to have raked over old coals in its questioning of whether London is the most appropriate place and asks that UKCMRI make every effort to work with colleagues across the UK so that opportunities are not lost. I say ‘oddly’ because I always thought this was in UKCMRI’s job specification anyway.
It also asks for a reconsideration of the issue of social housing near the site.
I didn’t know this but I understand that the building is going to be named after Francis Crick, co-discoverer of the structure of DNA,