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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.
I’m always very chuffed when people ask for a copy of my presentations after a talk. Usually I am quite good at emailing them to people or asking the organisers to send them round.
Anyway, I have done a lot of meetings lately and thought I would post here copies of my slides from the last three in Leicester, Leeds and Nottingham. A lot of the slides are common to all but there’s one or two differences given the slightly different topics. Thank you for listening, reading. These can also be found on my slideshare.net site.
Breakfast workshop at Health Services Research Network Conference: 18 June 2013: ‘Why public involvement is the most important meal of the day?’
Talk to Local Clinical Research Network (LCRN) meeting in Leicester: 19 June 2013: ‘Making it real: patients and public improving health research’
‘Only connect: working together to improve research:’ speech to patients, public, service users, carers and staff from the NIHR clinical research networks, Leeds, 26th June 2013
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.
The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday. I have to say I am highly impressed. In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group.
Why is it so good? Well, the research strategy is clear and visionary. It seems to strike the right balance between basic research and clinical research. But it’s more than that for me. Most important is the firm commitment to ‘Enhancing the involvement of people with cystic fibrosis in shaping research’ as one of its three enabling piorities. I also like their very simple but effective ‘SCORE’ approach to evaluating potential research ideas to fund. It’s about time more charities came out with similar focus and simple creativity.
I’m also pleased that CF Trust’s new approach to research is available to a wider audience using Cystic Fibrosis Unite among other devices. As I found out after I did the first (perhaps exciteable!) version of this blog CFUnite is independent of the CF Trust and funded by a Wellcome Trust People Award. But my excitement is not totally unfounded.
I love the fact that CF Unite embraces and pulls in all possible partners in making research happen – you really do want to be part of the enterprise. On the CFUnite site you can register your interest to help design and take part in clinical studies. And you can email them if you want to find out the results of relevant trials. This is just the sort of thing we should be doing in the name of transparency and in the public interest. You can find all these features here.
CF Trust complements this with its own cross-referencing and linking to CF Unite but also by giving people information on clinical trials taking place in the UK. This is a facility that it has made available for some time and shows its long-term commitment to making sure this sort of information is in the public domain.
Its a worthy package that has made my day.
I am indebted to a good friend and colleague of mine who, some time ago, sent me this BBC News story from last year. It reports on the rising concerns among Himalayan Sherpas about the lack of regard being shown towards their needs and the environment as scientists tromp all over the local geography. To the extent that they are threatening to withdraw their labour.
I used it last week for an NIHR talk. I read out extracts to the assembled post-lunch audience (yes, I care that much about my audience that I don’t like to work them too hard after lunch). Before I did so, I asked them to substitute every mention of Sherpa with ‘patient’ and every mention of a geographical place with ‘health research’ or ‘NHS.’
I invite you to do the same…It sort of works. Then ask yourself what would happen if we allowed the same behaviour in health research and what the outcome would be if patients and the public withdrew their labour? Well, of course, this behaviour does happen all the time and it’s something of a wonder to me that patients don’t object more often. They should do…and loudly.
Anyway, I like the story and thought I would share it more widely on the blog. It’s just a different way of getting the message across that public involvement should be a core principle of any health research organisation – funders, journals, Government, universities* blah blah. For it’s easier to get to the top of ‘Mount Everest’ if patients and researchers work in partnership. We are also more likely to climb the mountain that matters to ourselves and our fellow human beings if it becomes a joint endeavour.
I mean sometimes I listen to researchers on the radio talking from the top of the mountain they have just climbed and think…what the heck are you looking at from up there? For what did you climb that tor? Put your crampons on and get your rope. I think you’ll Fiennes that the action is over here.
Brief sermon from the mount is now over. Parting of the oceans will come later when I head into town.
* By the way if you every want a true indicator of how financially troubled our universities are, next time you visit one: count the number of cranes and then count the number of empty rooms, labs etc. Then do the same every time you go back. Interesting.
This is already doing the rounds on twitter but I thought I would share the email/letter that I have sent out to those who took part in the survey….
I am pleased to let you know that the results of the UK Clinical Trials Gateway (UKCTG) Patient and Public Survey conducted last summer have been published today by the National Institute for Health Research (NIHR). You can read the full report on the NIHR home page here:http://www.nihr.ac.uk/Pages/default.aspx .
Over 600 people took part in the on-line survey and it is clear from their response that UKCTG is seen as a welcome and important initiative. The challenge is to ensure that UKCTG meets its full potential from a patient perspective in the coming months and years. The main findings from the survey are as follows:
• 83% of respondents identified themselves as a patient or carer.
• 80% had not heard of the UK Clinical Trials Gateway (UKCTG) before receiving the survey.
• Only 28% had taken part in a clinical trial.
• 38% said they knew little or nothing about clinical trials and would like a clear and
reliable source of information to learn more; 56% said it would help them or someone
they care for explore opportunities to take part in a clinical trial now or in the future.
• 64% said they would like to find out about trials recruiting in their local area.
• 66% said they found UKCTG ‘easy’ or ‘very easy’ to find their way around the site, 28% rated it as only ‘satisfactory’.
• 67% said they found the information provided on the site ‘very clear’ or ‘fairly clear’. • 72% said that UKCTG should help them make direct contact with a clinical trial without going through their doctor.
• 88% of patients said the site should provide people with relevant links to patient
groups, medical researchers and funders, which are relevant to a clinical trial study. • 88% said they would recommend the site to others.
The report of the survey includes recommendations to UKCTG on how it should be developed to better reflect the priorities of people interested in finding out about, and taking part in, clinical trials. Recommendations are made in the following areas: Vision and Strategy; Awareness and Promotion; Facilitation and Recruitment; Content and Ease-of-use; Access and Marketing and; Public Involvement/User Panel. In my introduction to these I talk about the need for UKCTG to adopt an operating philosophy which is much closer to the growing appetite and expectations of patients when it comes to research:
“Inherent in the survey findings is a challenge to the UKCTG to align itself ever more closely with the priorities and needs of patients looking for research opportunities. At the core of this is a desire to see the UKCTG evolve its current model as a simple ‘information provider’ to that of a more interactive patient partner, which helps supports their choice to participate in a trial or not.”
This opens up many exciting possibilities and I am looking forward to working with you in supporting UKCTG to develop a a bold vision and direction for the future. A key element in this process will be the new ‘User Panel’ and your thoughts on the most effective way to establish this which captures and maintains people’s enthusiasm are most welcome. In the meantime I would urge you to continue to promote the site and the downloadable ‘app’ through your networks and in your conversations with patients, members of the public and research colleagues.
My thanks again for taking part in the survey. I shall be writing again in due course to those of you who expressed an interest in joining the UKCTG User Panel.
….more on this tomorrow.
I am involved in this follow-up study to one published a few months ago (and covered on this blog) about the poor information given to patients about the placebo in clinical trials. In the first instance the researchers are looking for people to input into the design of a leaflet. Details and contact email follows:
Have you ever taken part in research before? Would you like to help improve the way research is communicated to patients? Researchers at the University of Southampton are writing a new leaflet to explain placebo-controlled trials to patients and would like some volunteers to help.
We are looking for 10-20 people who have taken part in a clinical trial or other medical research. We will send you a copy of our leaflet and you can either write to us with your comments, email us, or talk to us over the phone. The leaflet is only one-page long, so we do not anticipate it will take you too long to tell us what you think about it. For more information or to volunteer, contact Dr Felicity Bishop on F.L.Bishop@southampton.ac.uk
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.
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.
Those of you who follow me on twitter (and you can do so by clicking on the twitter symbol on the blog), will know that, earlier this week, I was tweeting from Copenhagen in Denmark.
Myself and Derek Stewart, Associate Director for PPI at NIHR CRN CC, were there to help launch the Danish Health Forum’s public involvement plan. By the by, Derek has started a very interesting debate on Linkedin about what new technologies mean for the future of public involvement and I encourage you to take part – you will have to join first if you are not a member of Linkedin, but it’s free.
Anyway, here is what I said on the day…more or less!
COPENHAGEN – MAY 2012
Ladies and gentlemen, good afternoon.
May I begin by congratulating you on today’s annual conference. This event is clearly a very important milestone in the advancement of public involvement in health research in Denmark and it is a very great privilege and honour to have been asked to open proceedings.
I am also very pleased that over the past few months and years you have sought the thoughts and guidance of INVOLVE and our partners in public involvement in England and, on their behalf, can I say how much we look forward to continuing to work with you as close colleagues in the future.
Perhaps I should begin by telling you a little about myself. As you will know from your programme, I am Chair of INVOLVE – the national advisory group for the promotion and advancement of public involvement in research – which is funded by our National Institute for Health Research (NIHR). I am also the recently appointed NIHR National Director for Public Participation and Engagement in Research.
Prior to these I was the chief executive of the Association of Medical Research Charities (AMRC), an umbrella group which represents about 120 charities who collectively fund about £1.2 billion of medical research in the UK each year.
As you might guess, many of AMRC’s members are also well-known patient groups and it is with one of these – the Alzheimer’s Society – that my own public involvement story began, way back in the early nineties. At that time, it was one of the first of our charities to begin to seriously champion the public involvement agenda with the establishment of its patients in research network called Quality Research in Dementia or QRD.
Mogens has asked me – over the next 15-20 minutes – to reflect on the UK’s experience in public involvement, after which I am very happy to take questions.
That is quite some task!
So, rather than a timeline of key events, I have chosen to tackle the challenge by looking at what have been the fundamental strengths that have made a difference to advancing public involvement in my country. I am then going to look at some of our current challenges and opportunities and finish with some ambitions for the future.
To start, I thought it would be helpful to begin with the present day. For, what INVOLVE is, our role and what we do, in itself can tell us a lot about how we have evolved and why.
As I have said, INVOLVE is a national advisory group funded by our Government through the National Institute for Health Research (NIHR) for the promotion and advancement of public involvement in all forms of research. We define public involvement in research as research that is carried out ‘with’ or ‘by’ members of the public rather than ‘to,’ ‘about’ or ‘for’ them. And by public we mean patients, potential patients, carer’s and people who use health and social care services.
Our aim is to see a dynamic partnership between the public, researchers and others to advance all forms of research to improve the health and well being of the population. That partnership can manifest itself in many ways. But strategically i see our task at INVOLVE as very much to build relationships with other organisations in research – whether they be universities, our Medical Research Council (MRC) or the different programmes that make up NIHR.
We are composed of over 30 ‘members’ who comprise service users, carers, researchers, members of the public, clinicians, people from patients groups who are appointed every 3 years. Currently we have 4000 people on our mailing list, covering over 40 countries. We have a budget of £250k a year and I have sometimes heard it said – indeed I have said it myself – that we are not a delivery organisation in the sense of being at the front-line.
But actually we deliver a great deal.
Our task is to provide leadership on public involvement by supporting shared learning, to help build and share the evidence base through a network of people researching public involvement and by developing an online database of reports about the nature of public involvement and it’s impact, developing capacity and capability with briefing notes, guidance and our annual conference as well as other meetings, and influencing policy and practice not least by informing the discussions that happen within Government through our status as a government-funded body.
SUCCESS AND ACHIEVEMENTS
If I now look back over our history to when we were first established in 1996, I would point to several important factors behind our development as a body but also, I hope, our success and achievements to date. They are:
The rise of citizenship
Given my previous remarks, you will not be surprised that partnership is the first of the factors I would point to. From our inception, the desire and ambition to develop a partnership between the public and researchers, has been the core philosophy which drives our work. It has enabled us to bring together very different perspectives and encourage discussion in a safe haven. This was particularly important at the very beginning when the environment was very hostile to what we wanted to do, it remains equally valued today.
It is also fundamental to how we must deliver. For two reason. First it would be arrogant to operate as if INVOLVE is public involvement in research. It would not only disenfranchise our community but also mean that we would miss out on the many stories out there that would influence and persuade others. Second, given our size and resources the reality is that we can only take forward our work through partnership with, and support for, many others at both a national and local level. That often requires diplomacy and consensus working that does not always please the most passionate advocates. But, done well and done transparently, I believe it leads to more durable outcomes.
Moving on, we have also been blessed with outstanding leadership at both a local have national level. These individuals – including my predecessors as Chair of INVOLVE and Derek Stewart who is speaking to you later – have been instrumental in ensuring that the public involvement message has been heard in the meetings and rooms where it matters, in pursuing the agenda despite all challenges put in their way. There is also no doubt that the commitment of key figures in research has also been pivotal in out progress, not least by our Chief Medical Officer and Director of R&D, Dame Sally Davies, who heads up the NIHR, but also her top team of programme directors. They have been growing and important voices in the room with whom we have been able to join forces.
The third factor is that when the National Institute for Health Research (NIHR) was established six years ago, it provided a roof and funding for INVOLVE. Such stability and strong foundations – together with the leadership I have just mentioned – are important to giving organisations such as ours the continuity and guarantee of life that enables them to pursue their objectives, free of other distractions that can deflect them from their mission and purpose. The risk of complacency with such a model is removed by the fact that our contract has to be renewed on a regular basis.
NIHR has also been crucial to the development of clinical research networks in the UK – some but not all condition specific – that provide an infrastructure for the advancement of clinical research, a strong framework around which we have been able to drape public involvement. But I shall let Derek tell you more about these.
The fourth factor is that there is no doubt that we have been as much shaped and assisted by external factors – particularly the rise of citizenship in debate and policy – as I would hope we have shaped them. Since the mid-nineties we have seen the passage of legislation that has enhanced the rights of people with disabilities, minorities and others; that have reflected a growing desire to put the patient at the heart of care and search. That has been matched by an industry of effort by those who commission and provide services to include the public in their shaping. Not to mention an agenda from within science – driven by a sense of vulnerability about its relevance to society particularly in austere times – to be seen to have the public very much in focus. These things have helped, there is no doubt. The challenge has been to ensure that they are not merely skin-deep.
The last factor has been our ability – particularly in recent years – to be able to demonstrate the impact of public involvement on the quality and relevance of research. Two years ago, INVOLVE published a report with NIHR which gathered examples of this impact and we intend to repeat the exercise again. But it’s very existence has certainly helped us to strongly counter the argument that is often presented to us by researches about the lack of evidence. That is changing but I can not help note with some irony that in the ongoing reform of health and social care as well as developments in science such as personalised medicine, the individual patient story, their experience and their desired outcomes is having growing credence.
THE TASK AHEAD – EVERYTHING HAS CHANGED, NOTHING HAS CHANGED
Looking ahead, what are the key challenges and opportunities facing INVOLVE and it’s partners?
Well, we have a saying in England – I am not sure what the equivalent here in Denmark is – which is that ‘nothing has changed and everything has changed.’ For, among our challenges and challengers, there are some old familiar faces. There are also old faces with new accents and feature. But there are also some significant new issues for us to deal with.
I hope the ones I have selected not only resonate with you but also hold some additional learning for us all about our path going forwards.
Perhaps our task ahead is best encapsulated with two pieces of evidence. The first is a paper published in 2007 by Rosemary Barber and colleagues – Rosemary is a member of INVOLVE – based on a survey of almost 1,000 health researchers. It showed that less than one fifth had involved the public in their work and that many of those surveyed were deeply apprehensive about public involvement on a number of scores. The second piece of evidence is from a report that INVOLVE published with the National Research Ethics Service (NRES) at the end of last year. This examined the extent to which public involvement featured in research grant applications coming before ethics committees. It then looked at the funder of each of these.
In shorthand the report shows that just less than 1/5th of researchers responded with plans to involve the public, 43% of researchers seemed to misunderstand what they were being asked and 38% said they had no plans for public involvement. There is quite a lot of variation between different types of research as defined by who the funder is – NIHR funded research performing well, charity funded research applications being average, and industry seemingly having no knowledge that there is a public out there at all!
So our main challenge continues to be individual and institutional attitudes if not outright resistance to public involvement. There is no magic bullet here. Clearly there is much we can do to train young researchers and nurture a grassroots movement within our universities and elsewhere. But what we really need is much greater organisational leadership among research funders in particular. For instance, less than half of the medical research charities in the UK – who pride themselves on funding quality and excellence in science using public donations – involve the public in the governance of this research in any form whatsoever. This must change.
The second challenge also presents opportunities in my view. As you may be aware, we have recently seen legislation pass through our parliament which will mean wholesale change for the way in which health and social care is commissioned and provided. The Government’s stated objective since the reforms were first announced is to put patients at the heart of these changes with its mantra of ‘No decision about us without us.’
These reforms – whatever the commentary about them as a whole – actually represent a major opportunity for the advancement of health research through our National Health Service (NHS) and for public involvement. The legislation includes new duties on all parts of our health service system to promote and advance research. The absence of such duties up until now – in spite of the fact that research has supposedly been a core mission of the NHS – has meant that our hospitals and doctors have often neatly tucked research in their inside pocket rather than worn it on their sleeve, our of sight and out of the way of patients and the public except by invitation only.
This new challenge on the NHS actually means that patients have every right, with the appropriate tools and evidence, to go to their clinician and ask to be considered for a clinical trial or other piece of research. From this greater engagement and participation of patients, further involvement in the way that research is conducted will spring, research that is of greater relevance to their care and the quality of heir lives. I think that it also provides an opportunity to forge stronger alliances with our colleagues across the provision of care services to develop a wider social movement for change.
This goal of greater engagement and participation of patients is a new strategic priority for the NHS and one that I have been asked to take on as the National Director of Public Participation and Engagement in Research. As I often say, if we we want willing patients we also need willing leaders and a willing NHS to make it happen.
Not all think so. In fact many of my friends and colleagues think that there is a hidden agenda here that goes against the grain of what we have achieved already. I completely understand this although I do not agree. My argument would be that surely ever greater engagement and participation has to be the goal of any democratic endeavour. Also, that introducing concepts such as democracy and citizenship into research, is not purely about improving the process , but also about the delivery of improvements in health and well being. Otherwise we are in danger of modelling the behaviour of those we criticise who seem only interested in the scientific pursuit itself.
So I do worry somewhat the third challenge is self-imposed, that we are ourselves our own worst enemies, obsessed with definitions, almost puritanical about what does or does not constitute involvement, in danger of creating an academic pursuit alone, rather than remaining externally focused and dogged in our pursuit of what matters to the public and patients. I am not saying that these things are not important but we must be careful that they do not dominate matters to the exclusion of what we all came into public involvement to do.
Finally, a footnote but an important one, and this is that we live in times of deep austerity as you know. We are fortunate in having strong foundations but it is vital that we do not become detached from our grassroots and their experience where things are extremely difficult. For this is where our strengths lie and, if we are to build a real movement for change, then it must come from the ground upwards as much as anywhere else.
To conclude, let me share some ambitions for the future.
I recently did a video interview for The Guardian newspaper. One of these ‘five minutes with..’ where they ask you some serious questions but also some not so serious ones about the things that make you smile or keep you awake at night. I am not sure whether it is up yet but you might not recognise me as I was sporting a beard and had longer hair – much to my mother’s irritation.
Anyway, they asked me what I would like to see change in healthcare over the next five years. And this is what I said:
First, to see our National Health Service wear what it does in the name of research on its sleeve instead of hidden inside it’s inside pocket as I have said. This means every one of our hospitals being clear that it is ‘open for business’ for patients to come through their doors and to be offered the chance to participate on a clinical trials etc.
Second that every patient and their loved one sees taking part in research as part of their NHS entitlement, that they have the access to the information and tools which enable them to talk to their clinician and demand to be considered if necessary, to be able to make proactive choices about research in the same way that we aspire to enable them to do so in their healthcare.
Third, that all funders who fund clinical research conducted in the NHS can only do so if they are able to demonstrate a commitment to public involvement in how they determine their research strategy, set their research priorities etc
But I would add to that the need for us to take much more seriously the ‘respect and dignity’ aspects of people’s participation in research. That, as participants, they deserve certain things in return not least better information and feedback at the end of a trial.
And finally, it is for citizens across Europe to be working much more closely together in the name of public involvement in research. That is why afternoon’s such as this are important. Similar discussions are happening in many countries across the EU and the UK has much to learn from you and others as it can impart knowledge based on its own experience. Clearly many patient organisations have their own European groups and of course some patients/research ones exist although the agenda seems to be more about lobbying and education and information than changing the way things are done.
But it would be wonderful for patients, the public and indeed research if in five years time we were celebrating the coming together of our insight and passion in a European association which is for and about patients and the public in research. I look forward to seeing you then if not before and would like to thank you very much for listening to me.
Divvying up the costs of conducting research in the NHS funded by medical research charities is an intricate business. Who pays for that research nurse, their time in administering the extra treatment required in a clinical trial, the procedures and equipment needed as part of its conduct, the oversight and governance needed to ensure that things are done properly and with patient care uppermost in mind? When do these costs begin and end?
For both the NHS and charities the concern is to be able to demonstrate appropriate use of respective taxpayer or donor funds, for the purpose for which it has been intended; to have a system for the apportionment of costs which recognises the value and contribution of both partners to making trials happen and does not inadvertently disincentivise either because of perceived unfairness.
It is an issue which has been tussled over for a considerable period of time with the latest discussions dating back to well before I left the Association of Medical Research Charities (AMRC).
Happily the Department of Health and AMRC have now reached agreement and the final document – entitled AcoRD for short – can be found on the Department’s website. The document – which came out late on Friday – takes a principle-based approach and includes case studies to guide decision-makers.
It is an important document. Consistent and coherent implementation overseen by both will be crucial. The linkage of the application of the rules so firmly to those charities who have AMRC membership, is an important amplification of the status AMRC now holds in ensuring quality and excellence in the sector.
A few bytes and bobs of news about medical records, open data etc – the Danish are not just good at making drama
Data and its use for society’s benefit is one of the areas where we are now seeing rapid developments in both practice and policy. And not just in terms of health care or medical research.
I thought I’d link-up a few of the announcements and news items that have happened just this past week to give people a sense of what is happening.
Today we see UK Biobank - the anonymised database of medical records of half a million volunteers – go live (in every sense!). The volunteers I have spoken too have been very impressed with the way this initiative has been run and how they have been treated. It will be interesting to see how UK Biobank deals with the public engagement piece of their work as things develop over time. Anyway, it’s a really important newcomer to the landscape and should be welcomed.
Locally, you’ll notice that a lot more announcements of this sort are being made by NHS organisations – in this case NHS Oxfordshire - detailing plans to put summary care records online. Readers will be interested in the second half of this article which details the ‘rights of access’ arrangements and safeguards put in place to retain confidentiality.
But the most interesting report or development this week in my view, was yesterday’s publication by the regulator, Ofcom, of its study of our changing attitudes and habits when it comes to online living. The study does not look at personal health data as such but it is a fascinating insight into the cultural transformation that is taking place. Theer are various news reports about it but I would highly recommend you look at the full report. It points to increasing confidence among the British public about online activity but also a more switched-on one when it comes to what to look for in terms of protection of their privacy. There’s also an interesting finding that trust in Government when it comes to data is higher than that which people have in retailers or banks (well,obviously, on the last one!).
This is also a really fascinating read – a report by KPMG entitled ‘Accelerating Innovation – The Power of the Crowd’ – published on Thursday and which, aside from making the case that patient expectations will drive eHealth, looks at some interesting case studies from around the world of eHealth innovation. The Danish model looks particularly attractive from a patient perspective. I quote from the KPMG website about Sundhed.dk:
“Every Danish citizen has their own personal web page, can view treatment/diagnoses from their own hospital record, book appointments with general practitioners, send secure emails to health authorities, order medication from pharmacies, monitor self-compliance with medication, and get access to local disease management systems.”
By the way, if you are generally interested in the ‘open data’ issue you may wish to keep an eye on the current sciencewise project underway. I think the first round of public dialogue sessions were held in January/February.
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.