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Plain and simply good news from a citizen point of view. With thanks to INVOLVE and NIHR colleagues for making this happen,
Plain English summaries in National Institute for Health Research (NIHR) funded research.
The National Institute for Health Research (NIHR) is committed to making sure that each research study it funds has a clear and concise plain English summary. It is important that this information explains the research as a whole and is easy to read and understand. From14 May 2014 a good quality plain English summary, submitted as part of the standard application form, will be a requirement of NIHR funding.
What makes a good quality plain English summary?
It is clear, easy to read and is as jargon free as possible. It provides an overview of the entire research study that readers can understand straight away.
Why is it important?
A plain English summary is used in the following ways:
reviewers use this summary to inform their review offunding applications
summaries of funded research are made publicly available on NIHR and other research websites to inform the public and researchers
If it is felt that a plain English summary is not clear andof a good quality then the researchers may be required to amend their summary prior to final funding approval.
Where to get further information?
Visit the NIHR ‘make it clear’ webpage to find out
Or contact the NIHR Research Design Service
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.
A few weeks ago I mentioned meeting the Director of the Canadian Institutes for Health Research (CIHR) to discuss public involvement in research. Last night I stumbled on the following announcement by the Canadian Government about the development of a patient-orientated research strategy.
Excellent news. I am sure the news has very little to do with my meeting! However, I do recall once writing a piece for a local rag lambasting the local authority and rail authorities for letting the town station go to ruin only to find the developers move in the day after the article was published. I recounted this rather in a rather red-faced fashion to a friend and they said I should put it down to the ‘power of the press.’
Anyway, excellent news.
Today’s headline is taken from the menu for my Indian take away last night which talked of ‘exortic sauces.’ A spelling mistake it might be but I was rather taken with the idea of my curry sauce exorting me to savour its spices.
In a similar fashion do I feel the desire to devour all the exciting stuff that came out of my albeit brief appearance at the PatientsParticipate conference last Friday. It is the sort of science engagement that exorts you to explore, learn more and wonder…..
The US site PatientsLikeMe featured quite heavily in my session so I decided to post the link again for those who wish to follow the trail. For those new to it, patients can share their experience with others and this ‘data pool’ is increasingly becoming a bank for patients and researchers to find eachother with a view to trials etc.
The blog is pretty good too if you are happy to excuse the new media terminology about ‘mash-ups’ etc. It’s a real feast if I may to continue the food analogy.
[by the way if people have links of similarly interesting links I would be delighted to add them on the site)
PatientsLikeMe seems to be coming out daily with announcements about new ways in which people are using the site and also the partnerships they are forging with others and some of you may have views on the work they are now doing with pharmaeceutical companies.
Yesterday I had my first ‘induction’ meeting as Chair with INVOLVE’s excellent Director, Sarah Buckland. Although we didn’t talk about social media and PatientsLikeMe as such we did discuss the long-standing bias against user-controlled research and the degree to which science has not supported research and innovation led by it’s ultimate users, recipients or customers.
There comes a time when all traditional hierarchies are turned on their head by force of circumstance or societal change, change which they are unable or refuse to embrace. Coming away from my conversation with Sarah I wondered whether we are on that course now where social media and technological advances essentially mean that the tools are increasingly there for the pioneering patient or extrepreneurial member of the public to take control of their participation in ways that have never been envisaged.
To me, that’s terribly exciting. Challenging, but exciting.
To finish, and since I am in subversive mood, I thought I would finish by also signposting you today to Alice Bell’s latest blog which talks about the I’m a Scientist initiative that has been run by some universities. I am not going to steal her thunder by reiterating her story of what happened. But it sounded great fun and one of those instances where everyone comes away inspired by the connectivity of it all. She asks for suggestions of similar ideas – I quite like the idea of a Krypon Factor style contest in which combined teams of scientists and members of the public are pitted against one another to solve problems.
Now you know why I never became a tv producer.
If you believe the Government – any Government in fact – we are all entangled in webbing made of regulation red tape that makes us look like one of those mummies emerging from a tomb in a 60s Hanna Barbara cartoon.
However, I can’t help but agree on this occasion.
I don’t know about you, but returning home in the evenings can become a rather painful process of physically and psychologically shedding the red tape of the day. Even my dogs check the public notices at entrances to parks these days, so sensitised have they become to life in Britain circa 2011.
But it is not the known regulations I worry about; there are regulations we know we know. And we also know there are regulations that are unknown to us; that is to say we know there are some regulations we do not know. But there are also unknown unknown regulations – the ones we don’t know we don’t know. Now, they are the ones that scare me.
And in my opinion, it is often the case that someone’s interpretation of a known regulation can make it become an unknown unknown regulation. I even came up with a new metaphor for how it is affecting our lives – the ‘red tape worm’ – after reading this week’s excellent issue of Eureka about cyberwarfare and computer viruses. I must put that in writing to the new Health Research Agency when it is established this year.
Do you follow? Well, don’t worry if you don’t because you have a chance to cut red tape for yourself – just like pruning the spring shrubs – at the Department for Business Innovation and Skills new ‘Challenge Red Tape Website.’ Health and social care comes up on June 23rd.
On a more serious note, I would probably put the rules that have often stood in the way of patients and members of the public receiving some form of reimbursement to be involved in research, as an example of a known regulation that has, historically, become a baffling set of unknown unknown regulations. First, because of the way the rules have been interpreted up and down the country. Second, because of the way that the way that the Department for Work and Pensions (whose acronym of DWP sounds perversely like a socialist party) dragged its feet to find a way through the mess. Yes, this is an issue which has ‘form’ (pun fully intended) as they say in the police.
However, I am pleased to say that we are now seem in a better place. And the excellent INVOLVE have this week published a rather splendid guide entitled ‘What you need to know about payment: an introductory guide for members of the public who are considering active involvement in NHS, public health or social care research’ which you can find on their website.
I’m off to shed my regulations as they say.
I am at the INVOLVE two-day conference in Nottingham this week.
INVOLVE is the National Institute for Health Research (NIHR) funded programme promoting public involvement in research. It is perhaps worth adding that INVOLVE is the only publicly funded national organisation of its kind across the world. It’s a packed conference – almost 500 delegates from a wide variety of backgrounds including many researchers and research managers.
The theme of this week’s conference is innovation and impact and I was delighted that at this afternoon’s workshop sessions, TwoCan Associates launched their patient and public involvement routemap on which they have been working with AMRC and others for the last six months or so.
The routemap is really a very simple idea and works very much like the London tube map.
So, if you are a member of staff working in a research charity (or other organisation for that matter) and tasked with implementing public and patient involvement (PPI), the idea is that you follow the route and at each ‘stop’ can learn more about the beenfits of PPI in a particular aspect of research funding – from setting research priorities to making funding decisions and dissemination – plus look at some case studies of how others have achieved it.
I mean, what could be better than getting to drive your own tube train. Click on the picture below and you can try it for yourself.
If you are looking for information about the decision to get rid of the DG for Science post at BIS then go to Becky’s Policy Pages. I haven’t had time to catch up with all the news but I fail to see how three into one can go without some significant loss of focus and momentum on science within the department. No one should underestimate how important its current incumbent, Adrian Smith, in making the science case so forcefully to HM Treasury.