Here’s a few things that I’ve been collecting and now seems as good a time as ever to gather them together and share them as one.
Researchers may wish to note the following exercise that is running throughout universities and institutions to identify barrier to public engagement. It’s a repeat of an exercise done by the Royal Society ten years ago. The aim is to see how much progress has been made and what still needs to be done. If you get invited to do the survey please do take part – it’s important!
The Welsh Government’s research arm (formerly called NISCHR for short) has rebranded itself as the much more sensible sounding Health and Care Research Wales. Along with announcing £squllions of funding for some new research centres and units there, it also launched its new HealthWise Wales initiative in which it’s asking all people over 16 in Wales to join in research across the nation.
A really wonderful storify of pictures and messages from the ‘NIHROKtoask’ campaign up and down the country has been produced by the excellent communications team at the NIHR Clinical Research Network Co-ordinating Centre. You can find it here.
Cancer Research UK produced a very interesting report about the state of clinical research in the NHS with lots of recommendations for improvement not least more support for the workforce. The report entitled ‘Every Patient a Research Patient’ is here. Actually, I think it should be ‘every willing patient.’ Force of habit I suppose.
Progress Educational Trust have been conducting a survey of the readers of BioNews on their views about the 100,000 genome project. Last week they released the findings of the poll of over 750 people finding that 74% of people would take part in the project if asked. The survey is also interesting in looking at the reasons why people would or would not participate. You can find a brief article about the exercise which has been conducted on behalf of Genomics England here.
The Health Research Authority (HRA) has issued guidance on what information patients should be provided with at the end of a research study. They consulted widely on this, earlier in the year.
The Association of Medical Research Charities (AMRC) has a new Chair, Lord Sharkey. No, he’s neither a historian or ocean biologist. Here’s his bio. You might also be interested to know that charities who have run a James Lind Alliance Priority Setting Partnership (PSP) have set up a shared learning group. Contact AMRC direct for more info.
Remember, pennies make pounds.
What should we make of the latest figures from INVOLVE and the Health Research Authority (HRA) showing which funders are best at public involvement in research?
In a re-run of an joint-exercise first done in 2010, INVOLVE and the HRA looked at the public involvement component of over 1100 research applications that went before research ethics committees in 2012.
For non-commercially funded research (the National Institute for Health Research (NIHR), medical research charities, Government research councils) they found that 40% of researchers reported involving or intending to involve the public and that this could be validated on closer inspection. This is up from 29% in 2012. A further 40% did not understand public involvement based on the information presented and 20% had no plans whatsoever.
For commercially funded research, however, the headline figure for researchers reporting public involvement dips to 5% (it was 2% in 2010) and, worse still, 75% said they had no plans for public involvement compared to 67% in 2010. This suggests that, overall, things have got worse rather than better in the pharma sector. Nonetheless I am not prepared to write them off as a lost cause just yet – I’ve just been reading quite a good paper by the ABPI and Vermilion Life Sciences about involving patients in re engineering medicines development ahead of a round table vent tomorrow. And here. Both suggest that industry may be understanding the need to look beyond participation in trials as the ‘be all and end all’ of research.
Break down the figures for non-commercial research a bit further and we find a general picture of improvement. 78% of NIHR applications had public involvement compared to 67% in 2010. Medical charities improved from 37% to 47%, Universities went up to 31% from 24% and the Research Councils up to 28% from 14%. The fact that universities show the smallest rise is strange given the emphasis on ‘impact’ in the Research Excellence Framework (REF). But then universities do seem to be a bit preoccupied with improving public understanding of research as opposed to involving them in decision-making. And I still think charities should be competing with NIHR for the top slot.
The report makes a number of wise recommendations for improving the situation. These suggest that research ethics committees could be more searching in their enquiries around public involvement as part of their overall approach to ensuring research is ethical. Also that funders might wish to ponder the degree to which their research really is meeting patient and public priorities if they can not demonstrate their active involvement. There’s also clearly a significant task to be tackled in education and training researchers in public involvement as part of their career development.
But – and this is purely a personal view – you do wonder whether any research team should be allowed to present something to an ethics committee unless they can demonstrate public involvement or similar evidence of due consideration being given to public views? After all, they are using a publicly funded system for enabling them to get the work done, so perhaps there should be a quid pro quo.
I will leave you to debate who emerge as the good, the bad and the ugly funders in this particular exercise! Funnily enough, I happen to be speaking at something called the Clinical Innovation Congress next week as part of a session called ‘The good, the bad and the ugly in clinical trials’
The full report can be found here.
Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends?
Diagnosed with blood cancer, Chloe only has one hope…YOU. Text HOPE…. Anthony Nolan Trust 2013
Elliot is deafblind. He can’t tell it’s Christmas. Text TOY to….Sense
Help us beat cancer sooner – Cancer Research UK cinema advert late 2013
In the fight against cancer every moment counts
Because we’re not just fighting cancer
We’re racing against time
To do more research
To find more cures
To save more lives
One day research will bear cancer
And the sooner you give
the sooner that day will come.
Cancer Research UK Jan 14
We’ve found a cure for blood cancer. Pleased to meet you.
Anthony Nolan Trust
Conquer the London to Brighton Bike Ride
British Heart Foundation (BHF) tube advert jan 14
Cancer doesn’t care if you put this in the bin
(Cancer Research direct mail shot) feb 2nd 14 at home
Because no one should face cancer alone Feb 2014 train poster Macmillan Cancer
These things happen to my mother (‘other people’ crossed out) Breast Cancer CampaignMarch 2014 Warren St tube
I wish I had breast cancer
Newspaper ad – Feb 14 – Pancreatic Cancer Action
So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week. Not that I’m a great fan but it seemed apposite given my week. This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below). To think I used to spend three weeks every autumn to attend the party conferences. It’s like regaining a bit of my life again.
But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2’ website (this is the review looking at information governance in the NHS including use of patient data for research purposes). Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work. Look under the Southern Informatics listing on this page.
I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS. I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients. I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter. Let me worry about that one.
I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline). The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all. It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.
The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate. Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week. It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’ Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute. I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.
Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website. Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs. Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.
This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials. It is being developed by DeNDRoN and will be developed shortly. This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s. The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.
Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places. Reminds me I must buy Ben Goldacre’s new book to read on my travels. And this from the US Federal Drugs Administration today seemed relevant.
If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations.
Herewith some new and some not so new ‘kids’ on the block in the world of research.
First, great to see that my good colleague and patient advocate, Derek Stewart, has started his own blog and has got off to a predictably brilliant and incisive start with a piece entitled: ‘What I want from research.’ I’ve also listed his site on my blog roll (see below).
The British Heart Foundation (BHF) has a new report out today entitled ‘Clear and Present Data.’ It examines how use of patient data is integral to medical research. There’s a youtube video available through the above link and BHF have also published the results of a YouGov survey of public opinion on patient data issues. Suffice to say that this is all part of a significant push by the medical research charity sector on patient data issues – it is, for instance the theme of AMRC’s parliamentary summer reception on 12th July.
The BHF report makes six recommendations including introducing an opt-out system for use of anonymised data in research (already a Government proposal subject to the outcome of a public consultation later this year), and changing the remit of Caldicott Guardians. Not sure about the last one – I would need to think it through from a patient perspective in the context of a ‘localised’ NHS. But good to open the debate. For the results of the survey and an overview it might be easiest to read the guest spot on the Association of Medical Research Charities (AMRC) blog by Joe Clift from BHF.
A number of BHF’s recommendations are focused on the HRA, so a brief ‘congratulations’ to the excellent Janet Wisely who was recently appointed Chief Executive there and has really taken up the public involvement challenge.
Finally, the entirely new kids on the block are AHSN’s or Academic Health Science Networks.
The Department of Health published a guidance document about their formation on Friday, and potential networks have been asked to submit ‘expressions of interest.’ AHSNs really do represent a significant and positive enhancement in terms of where research meets the NHS. It is not so much what they are as an entity as what they will bring together in terms of local NHS organisations, academia, industry, providers etc behind a common purpose. It is also the comprehensiveness of their remit given that they will not just be responsible for the diffusion of innovation but also the promotion of research including trials and public participation. I suspect more change will ripple outwards. The Governance arrangements will, however, need to be strengthened with strong public involvement mechanisms.
Perhaps AHSN’s represent new lava flows in research bringing more fertile grounds for growth with them.
This is an extract from a talk I gave on Monday to the Faculty of Medical Sciences at the University of Newcastle. I tried to answer the following question:
The life sciences are seen as fundamental to the nation’s health and to economic growth. But what is the public’s role in making this happen?
The alternative title is ‘Not just bums on seats’ for reasons that will become clear. I should add that, prior to my lecture, I had the opportunity to discuss the Faculty’s public engagement strategy with senior staff and colleagues and would like to thank them for their warm welcome and hospitality throughout the day.
Over the next hour I’d like to explore with you why I believe a partnership between the life sciences and the public is fundamental to the former’s success in meetings its aims to improve the nation’s health and wealth; that our efforts as partners and as part of the growth agenda, must be conceived of as a joint enterprise.
I shall also argue that the life sciences needs to understand the distinct partnership roles that the public can and wants to play: as funder and advocate, participant, citizen, co-producer and trustee, before we can make the most of the opportunities that lie ahead. Only when we support these roles so that they are mutually reinforcing will we make the most of the opportunities ahead. Indeed, I would argue that the most successful science organisations will be those that understand and reflect this in their strategies and plans.
The public as fellow advocates
Why does this partnership matter, and why should it matter now more than ever? Well, let’s turn first to the role of the public as funder or donor, and as advocate.
As you may know, word is beginning to spread across Whitehall and Westminster if not wider, that the next public spending review is likely to take place a year earlier than expected. Also that, if the last spending review was felt to be uncomfortable, then the one about to land upon us is going to be even more so, with science facing a sterner test of its resolve.
The life sciences fared comparatively well to other sectors of the economy in the 2010 spending review. That was not just because of the level of funding but also because of the continuity of approach in terms of policy and direction with what had happened under the previous Government. This political commitment to life sciences has been sustained in the months since. Only last week the Science Minister, David Willetts, said in a guest blog for Cancer Research UK:
‘The life sciences are at the heart of this Government’s plans for sustainable economic recovery.’
In December last year we saw the publication of the Government’s life sciences strategy with its ambition of making the UK ‘a global hub for the life sciences’ by supporting a collaborative ecosystem, reducing regulation and driving innovation through ‘clusters’ and ‘catapults.’
A good part of that strategy – and what has happened since – has been devoted to enabling more research to happen in the NHS through: regulatory change – including the setting-up of the new Health Research Authority (HRA); enabling better access to patient data for research purposes; strengthening the rights of patients to taking part in clinical trials as part of their choices around care and treatment and as a right under the NHS Constitution; and establishing a new statutory duty on all parts of the new NHS to ‘promote research’ during the passage of the Health and Social Care Act.
None of this, of course, means that science generally will not face the same questions about impact, value, return on investment, the difference it has made to people’s lives, that it was challenged with last time.
In fact, one of the problems we will face is that the stories and evidence used last time will have likely devalued as a currency with HM Treasury and others simply because they will have heard them all before. A premium will be put on new evidence but also, perhaps, on similar evidence being presented with a next instalment that is compelling in ways which will persuade its listeners that they should support the authors to write another chapter of, better still, a new edition.
It is also going to take more than the vivacity of a ‘sectional’ ‘Science is Vital’ campaign or a science-only platform in the shape of the excellent ‘Geek Manifesto’ by Mark Henderson to win the argument. Science must better connect with the wider public if it is to make its existence and better still, its strengthening, of political expediency.
But at least we start in a potentially strong place on this too in respect of health research, in the shape and form of our medical research charity sector. Medical charities – as represented by the 125 strong membership of the Association of Medical Research Charities (AMRC) – collectively raise and fund over £1 billion of research in the UK every year. That figure is double what it was just over six years ago. Charities now represent over one third of all publicly-funded expenditure of research here in the United Kingdom, a situation that is unparalleled anywhere else in the world.
Given that the majority of these funds are raised from the British public – about £2,500 a minute by my calculation – charity is an important symbol of the public’s interest in research. Medical research is the leading charitable cause to which people give (in spite of a recession) in the UK – only the Netherlands has a higher percentage of its population raising money for research. And all the evidence suggests that the public see a donation to research as being of immense in making a difference, and stands as a good counterpoint to the argument that the public are semi-detached from research as an activity.
The other deliberate reason for pausing on charities for a moment is to ask you to consider one other important feature of their rise. The growth in charities as research funders has gone hand-in-hand with an increasing assertiveness on key issues in science – from hybrid embryo research to the Health and Social Care Act. It has been driven very much by those charities which are in turn propelled by a strong and active patient group or patient constituency by their side, knowledgeable not just about their condition or that of a loved-one but also about the research that is important to it.
And yet, for all this, it would be wrong for science to see medical research charities as a surrogate for true engagement with the public. Or believe, as I fear it sometimes does, that money donated is symbolic of an open-ended commitment to it by the public. Or as an illustration, case study or human interest story to be manipulated to make its case. The challenge is for science to make its own connections with the public as a fellow advocate.
That is no mean feat. For science will need to shift its philosophy from seeing the public as a crowd that needs to be educated, to a potential source of support that is to be carried with it. A friend of mine who used to produce rock festivals recently told me that the first act in the field to be used as a venue is to arrive and wait for the BT person to arrive and put in a phone line. The rest all stems from this. I sometimes look at what we do in science communication and what is passed off as engagement and wonder if we have only just got past that first act, with the phone line in place but with only the occasional incoming call being accepted.
The public as participants
Now that I’ve got that general point off my chest I wanted to turn to the part that I believe the public can and want to play in making health research an engine for wellbeing and growth. For I hope the most important reason for developing our partnership lies not with the need to make a political point, but more in the belief that we can achieve greater things to improve people’s lives if we work together.
The Prime Minister’s Life Sciences Strategy statement is as good a starting point as any for this part of the discussion because of the desire he expressed that every patient should see themselves as a research patient – as demonstrated by their willingness to share data with researchers and ultimately in taking part in trials: the ultimate goal being for the UK to remain a leading centre for clinical research in the world.
My role as NIHR National Director stems from a recognition within NIHR that, having established a world-class infrastructure for research – the supply side, we must now pay more heed to the ‘demand-side,’ that is creating more ‘pull-through’ of patients into research – including, but certainly not exclusively, clinical trials.
Generating this public demand for taking part in research will mean giving better information and tools to patients to find out about, and ask their doctors, about research such as the UK Clinical Trials Gateway (UKCTG). It also means better information and tools for clinicians. But, most of all, it will require an NHS system more set-up to meet this expectation than has hitherto been the case. Last month, on International Clinical Trials Day, NIHR CRN CC published a survey showing that:
- Only 21 per cent of people surveyed were aware that carrying out research is a key activity for the NHS, yet…
- 82 per cent of people surveyed said it is important for the NHS to offer opportunities to take part in healthcare research and…
- Less than seven per cent of people surveyed said they would never take part in a clinical research study.
The public appetite to take part in research would clearly seem to be there. Yet the picture is very patchy indeed when it comes to NHS Trusts that are geared-up – as one NHS Trust aspires – to offer every patient who walks through their door, the chance to take part in an appropriate clinical trial. The new NHS presents both challenges and opportunities to change this and the focus of our attention must be on the ecosystem that exists around a Trust. That is why initiatives such as VoiceNorth and the local collaborations it can build are going to become more and more important in the coming months and years.
But we will miss many opportunities if we take a ‘bums on seats’ approach to this agenda and define public participation only by the number of people who take part in trials. Clinical trials can only be a high visibility cloak for the participation agenda. They do not in themselves tell us much about the degree to which we have created a research-active population.
Citizens, citizens, remember we are citizens
Just last week I was talking to some colleagues about the degree to which research participants are kept at arms-length in many cohort studies, studies which often ask their public to sign-up for life so as to generate new data and learning to improve health. The reasons for this are many and some are well-founded, but not without solution.
The opportunity missed is that of learning from people how these studies might evolve, adapt and share over time in keeping with people’s lives and needs. The risk is that, before too long, people who see themselves as consumers with rights in every other aspect of their life will begin to feel somewhat used and abused, word will get round and researchers will metaphorically see doors closing as they turn into the street. The same is true in clinical trials where many patients find a frustrating lack of attention paid to basic ‘rights’ such as the right to receive feedback on the results of a trial and what it means.
In this, as with all research, we need to begin to see people not purely as participants but as citizens, members of a community who have rights as well as responsibilities in the name of pursuing new knowledge. Indeed, citizenship is how we should frame the relationship between researcher and patient. Citizens, citizens, remember we – both you and I – are citizens.
The public as co-producer
The other role that the public can play in making life sciences a driver of economic growth and the nation’s health and well-being is as co-producer.
We now have a growing body of evidence – the starting point for which is encapsulated in the 2010 NIHR/INVOLVE report ‘Exploring Impact: Public involvement in NHS, public health and social care research’- that involving the public can help strengthen research design, shape research strategy and agendas, execute the research efficiently and disseminate its findings to a wider audience.
Whether it is the prostate cancer trial that was saved from failure once patients were involved in the way the trial was articulated to potential participants. Or the James Lind Alliance Priority Setting Priority Setting Partnerships approach that is now embedded in NIHR and brings together patients, researchers and clinicians to identify priorities for research. In fact in many other countries the UK is considered so good at this stuff that they think it is the land of milk and honey – to quote a colleague of mine.
But in spite of the many successes that we – INVOLVE and its partners – have to our name, we also face significant challenges. In fact the task ahead is best encapsulated with two pieces of evidence. The first is a paper published in 2009 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 considering their basis of support, and industry seemingly having no knowledge that there is a public out there at all!
An interesting post-script to the industry story is of course that, as its representative associations and others have tightened up the rules on what it can or cannot do to inform and contact patients, so it has pulled away from even the most benign public engagement activities. But that is a story for another day.
From an INVOLVE perspective, the main challenge continues to be individual and institutional attitudes if not outright resistance to public involvement. Understanding the reasons for this and determining the best way to tackle it is something you may well have views on today. The opportunity for me seems to be how we might move co-production out of the handcuffs of what happens in the traditional peer review process and its obsession with lay membership and patient representation, to using new technologies and social media to gain a wider view and insight from the public at all stages. We need to think differently and more creatively about this stuff.
The public as trustee
There does seem one final way in which the public and researchers can find mutually beneficial ground on which establish a partnership.
I know that ‘Impact’ – particularly in the context of the Research Excellence Framework (REF) – is a highly popular topic of conversation in universities. It is also very much on the public involvement agenda as well. Whereas you fire brickbats, we are still at the stage of scratching our heads to some degree. What is the evidence? How can we best demonstrate it? How do we define value? Should we bite the bullet and begin to crunch some numbers if I may mix metaphors for a moment? And I am sure we have much to learn from you and other colleagues on how best to tackle this agenda.
But given the rise of ‘Impact’ as an agenda, and the inevitability with which Government is likely to ask for evidence of the soundness of its investment in science it would appear absolutely essential for science and its public to be working together to articulate this value. And that brings me back full circle to the role of the public as fellow advocate.
And yet it is more than that. It has always seemed to me that the ideological blind-side of science when it comes to public involvement has been its failure to see it as protective air cover for the sort of political storms and difficult public debates that do come along more regularly than would we wish.
Even if people find it difficult to accept public involvement as a value-add in terms of the quality and relevance of science, then the societal trends towards ever greater scrutiny of what those who receive taxpayer and public funds do in its name, should surely point to the need to involve the public as part of good governance and accountability to instil wider public confidence.
Close and conclusion
If you were to ask me for a vision of the future it would be as follows:
– For citizen-driven research to be seen as integral to the the UK’s health research ecosystem, a way of doing research which brings many partners together including the public to derive ever-greater value out of what we all do, and where there is mutual respect and acknowledgement of respective roles and expertise.
– A health research system in which all our public funders have public involvement as a driving philosophy for the way they work.
– And an NHS in which patients are challenging their Trust and doctor to make real their right to participate in research as part of their care and treatment.
I hope today that I have given you good grounds to see the public as an important partner of the life sciences in meeting its ambitions, in also setting out the many roles the public can play to this end.
I said at the beginning that the best chance of success will come if we see these roles as mutually reinforcing and find ways to make that happen. Equally, the most successful science organisations in the future will be, I believe, those that offer diverse opportunities to the public to be a partner and allow their public to switch between these roles according to the needs of the time. My sense is that you are thinking along the same lines here at the Faculty.