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We have just passed the mid-way point in the ‘evidence-gathering’ phase of NIHR’s strategic review of public involvement entitled ‘Breaking Boundaries.’ So here’s an unofficial Chair’s view.
The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR’s website here
People can at the moment choose to respond to the review using the downloadable questionnaire on the website, or using the online survey which is available here. So far, almost 200 people have responded to the online survey. 61% have said they are a service user/patient/consumer/carer.
In addition there is now a facilitator guide as well as some PPT slides available for people who are planning to hold a group discussion with patients, carers and colleagues before responding. Our sense is that quite a few organisations are planning to do this as part of their response. Anyway, the guide and the slides can be found at the end of this post.
Also over the last month we have held discussion sessions at four meetings where the excellent RAPPORT study of public involvement was reported. These events took place in Manchester, Bristol, London and Cambridge and reached about 200 people, again mostly patients, carers and members of the public. Thinking about these sessions and the sorts of comments we are getting through the written and online survey evidence, some key issues and questions. Thematically, these might be headlines:
- The purpose and value of public involvement
- The infrastructure needed, national, regionally and locally, to deliver public involvement
- The resources necessary to deliver public involvement that works
- The importance of relationships to the success of public involvement
- The learning (knowledge, skills, experience) needs of all partners and how to support them
- The need to tackle the impact and outcomes agenda
We have also held two ‘international’ sessions by phone with colleagues from Canada, USA, Denmark, Australia and the European Union. It was clear from these conversations that the UK is held in very high regard for what it has achieved in public involvement; we are the recognised leader in many respects. Also, that this leadership is closely associated with the work of INVOLVE over the years. Nonetheless, we have much to learn from them. We are all battling with the need to prioritise and find models suited to the future not the past or present. The case for an international alliance or association where we can share our ideas and challenges is growing in strength.
This week we will be meeting with representatives and members of the Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI) to get their views on public involvement in research. Heading into June there will be a range of events where we will be holding ‘consultation’ sessions including North West People in Research Forum on 30 June and the Health Services Research Network (HSRN) conference on 19/20 June. And, finally, some yet-to-be scheduled tweet chats and social media activity. Please remember that the hashtag is #PPIBreakingboundaries
Please keep the responses coming in. I know I speak on behalf of all the review panel when I say they are insightful, helpful and hugely important in their own right.
The previously mentioned guide can be found here:
What is, I wonder, the equivalent of Noel Coward’s lyric ‘only mad dogs and Englishmen go out in the midday sun,’ which might encapsulate the phenomenon that is the Virgin Money London Marathon?
This morning tens of thousands of runners will set out from Greenwich Park as they do every year with high hopes of finishing two, three, four or more hours later at Buckingham Palace. It will be the 34th London Marathon.
People from all ‘runs of life’ including patients, carers, doctors, nurses researchers, scientists and charity fun-runners will have trained long and hard these past few months so that they can take to the Capital’s streets and know that, with every pounding foot, money is being raised for their favourite cause. And medical research dominates those causes.
It is difficult to say precisely how much of the £660 Million raised for charity since the London Marathon started in 1984 has gone to medical research. But my reckoning is that, out of 54 charities who have been honoured to be the official London charity of the year since then, 20 have been medical research charities. The British Heart Foundation leads the pack having been chosen four times, the Anthony Nolan Trust is not far behind. Including this year, it has been the official London Marathon charity on three occasions. There’s a page dedicated to the history of the London Marathon and its links to charities which is worth a look if you are interested.
The first of these medical research charities was the Middlesex Hospital Research Fund in 1986, the hospital being notable for being a significant cancer research centre then and now I believe. Also, for being where I was born!
There are many, many more charities who simply enter runners into the event of course. I calculated that, of the 91 who I assume pay for the honour of being included on the main listing provided by Virgin Money, 38 are known for their work in supporting medical research. Yet this only skims the surface. Trawl further through the A-Z listing and many household names pop up who also do much to fund medical research. And who knows how many local research charities barely merit a mention beyond their local newspaper if that.
And what of the runners themselves? I have a feint recollection of turning up at Trafalgar Square in 1993 or 1994, and being marshalled by the wonderful Paula Dawes – the Alzheimer’s Society’s then head of fundraising who did more for staff and volunteer motivation with her gigantic fundraising thermometer on the wall than any excel spread-sheet produced for a committee – to cheer on just over 20 runners on a dreary Sunday morning. Last year, the number of people running for the Alzheimer’s Society was nearer 400 I believe. That seems a pretty incredible rise in the numbers.
The links to medical research do not end there. For 31 out of the last 34 years, there has been a London Marathon Medicine Conference which looks at the medicine and science of marathon running. It is also proving to be a teaching and research opportunity for sports scientist students. However, I would be interested in knowing whether anyone has published a scientific paper about, or run a clinical trial involving, London Marathon runners? Forgive me for not knowing that, if there has been. Perhaps the only thing we lack is a few more significant medical research landmarks along the route; The Crick in 2016? It might be one for the public engagement team there to think about.
Philosophically I wonder whether there is something deeper that draws together the modern penchant for running marathons and our commitment to, or support for, medical research? The metaphor of the marathon certainly serves us well in health conjuring up images of commitment, camaraderie and the joy of reaching the finishing line.
For example, my good friend and colleague, Derek Stewart, has written before about the similarities between his progress as a runner and his journey in public involvement in research. I also remember from my time at the Alzheimer’s Society an article written by a carer, comparing the years spent tending for their loved-one to that of running a marathon. It became a very popular piece among fellow carers and supporters. How many times have we also heard scientists and researchers talk about the long process from scientific discovery to viable treatment of therapy?
For this writer (and I am not a runner) the act of doing a marathon is a symbolic nod of respect, a doffing of the cap or handshake of support, in recognition of what it takes to live with ill-health and to find a remedy.
And we shouldn’t forget that the London Marathon is just one of many such events that take place up and down the country throughout the year – a good few in the park behind my house in South London – where people are going that extra mile for research. Indeed, considering the UK is second only to the Netherlands (70% versus 78%) in Europe terms of the number of people saying they have donated money to fundraising campaigns for research – the Europe-wide figure is 39% – that’s one gutsy performance by our marathon runners.
It also reinforces what I think is the key message that emerges from the recent IPSOS Mori/Department for Business Public Attitudes to Science report [by the way this is a superlative piece by Alice Bell in The Guardian about it. He blog is worth checking out too] . Namely, that you may be able to make an argument that the British public’s understanding of science leaves much to be desired. But you can’t fault their gut instinct in support of it. And what better symbol of that, than their staying the course over 26.2 miles.
Good luck to them all. And, if any should be reading this afterwards while nursing aching limbs and sore feet, thank you.
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
The fundamental issue at stake here is respect for the citizen.
The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper?
Many will say that NHS England – who yesterday announced a six-month pause in the scheme – have taken the biggest hit. But no one emerges with great credit from this affair. For citizens are non the wiser one way or the other. They have been ill-served by policy-makers on both sides of the debate, as they have been on this issue for as long as I can remember.
I should say that I support care.data.
I think that it will be a secure system but that there are always risks. And no guarantees. I buy into the notion that it is important to future medical research. But I think the claims around this are often exaggerated and don’t do their proponents any favours. I think a form of ‘opt-out’ is the most practical option and in keeping with the values that most of us hope underpin the NHS. Yet I also think that we should have the right to change our minds if and when our life circumstances change.
I think the professions have played fast and loose on the issue for too long. After all, a lot of their power within the system is locked into the current status of yours and my medical records and data.
When we developed the ‘Your health records saves lives’ leaflet many moons ago, citizens were more willing to share their data than GPs who tended to take up a highly paternalistic stance. However, more than a few were less and less paternalistic about their patients when it came to the prospect of working with pharmaceutical companies and being rewarded for it.
Anyway, that’s an aside or should I say unwarranted broadside. But I am afraid that care.data and the years of debate about data preceding has often been a case of policy-makers being, at best, neurotic and, at worst, mistrustful of their fellow citizens.
Fact is that I have been able to form an opinion because I have had an opportunity to listen to, and interrogate, the arguments at close quarters. And that is what was so wrong about the care.data leaflet campaign. In tone and style and delivery it was dismissive of the citizen and their right to question and form an opinion. Would it have been different if NHS Citizen had been in place I ask? Could it not be the perfect issue on which to test and perfect this initiative? Or is that too much to expect?
As an example of how ‘national’ and ‘local’ can work together in the new NHS to roll-out national initiatives, care.data has been a disaster. Whatever happens over the next six months, the initiative must be co-produced with citizens at source, and its delivery collaborative effort by NHS England working with Healthwatch, patient groups, GP Participation Groups and many other partners. If care.data means that much to our nation in terms of health and wealth, we should spend the time and money in investing in our citizens to understand why.
And, lastly, if researchers and doctors and managers want a lifetime of yours and my data to work on then they need to do more to develop a relationship with citizens about its importance and how we can be better custodians of it. A few weeks ago a head of an NIHR Biomedical Research Centre was telling me how their NHS Trust is now including short statements in letters to patients to help grow understanding about how data is used. It is a small example of the level of visibility we need for this important aspect of delivering care in the future.
Fact is, if we want a 21st Century NHS, we need a 21st Century attitude to involving citizens in decision-making.
So if it’s shock tactics they were after, and public attention to go with it, then they must be delighted. As must the advertising company most of all. Job done, they will be saying I suspect.
One can understand the temptation for charities to go just that little bit further in making us sit up and notice. More charities than ever before are competing for yours and my funds. They are, I believe, genuinely motivated by a desire to make sure potentially life-saving messages get through to us. But do the ends really justify the means?
I can remember two occasions in my charity career when judgement calls needed to be made about advertising. At the Alzheimer’s Society in the mid-nineties the staff recoiled at a proposed advertising campaign showing a brain scan with the slogan ‘It blows your mind.’ But when tested with people with dementia and their carers they loved it. They felt that the time was right to shock people a bit. So we ran it. All seems a bit tame now twenty years later. I can’t even find the posters on the internet.
More recently when I was at Ovarian Cancer Action I looked at some proposals for a ‘shock’ advertising campaign and would have probably signed on the dotted line if I had had a choice. But I was persuaded otherwise by colleagues. Looking back, they were right and I was wrong. There was little evidence to suggest there was the appetite among patients and carers for such a message at that time.
The reason for telling these stories is simply to make the point that – as with much else in running a charity – things get dangerous once you get too far ahead, or too far behind, your beneficiaries and how they think and feel. To be fair to Pancreatic Cancer Action it does sound as if people with pancreatic cancer have been involved in the campaign. They feature in it at least anyway. The founder Ali Stunt makes this point in her blog about the campaign yesterday. Although the fact that -as far as I know – other pancreatic cancer charities are not clamouring to endorse it might suggest that they are hearing otherwise on the ground.
On This Morning earlier today, the resident TV doctor, Dr Dawn, said the controversy about the campaign was based on a misunderstanding of its message. The charity is wanting people to go to their doctor with possible early symptoms to get them checked out as possible. Fair enough. But if the message is being obscured by the medium’s ‘shock tactics’ then I would say the campaign is failing in its objectives. I could understand it a bit more in a strange way if it was a cool fundraising pitch but not as a health improvement campaign.
I do agree with others that the charity has crossed the line into quite dangerous territory in which we are being asked to consider whether one disease is nastier than another. Is that really what charities want now? As Breakthrough Breast Cancer have said today: ‘It’s not a competition.’
It’s a matter of judgement at the end of the day. And I am no Mary Whitehouse. But in my opinion the charity has made the wrong call.
I just hope it’s not counterproductive in the long run.
….despite the temptation.
Summer means many things for me. One of them is keeping track of the football transfers. Here’s hoping that the Eagles do manage to persuade Ronaldo to South London!
The comments that managers make about players never cease to amuse me. One of the most common goes something along the lines of: ‘He’s a good lad that Denegri, he just needs an occasional arm around the shoulder.’ During the playing season this is usually before or after they have been sent off for some professional foul.
I have not decided whether it is a professional foul worthy of a yellow or red card. But the perennial resistance of clinicians to take part in the matching of patients to clinical research seems worthy of a caution at least don’t you think? It is disappointing to see it feature yet again in the feedback we have had to the ‘OK to Ask’ campaign that NIHR ran for International Clinical Trials Day (ICTD) in May. You will recall that the aim of the campaign was to highlight to patients that they can and should be asking doctors about opportunities to take part in research.
A summary report on the campaign can be found here. As proof of principle that we can run a co-ordinated campaign about research across both NIHR and the NHS, and in support of a simple message aimed primarily at patients, I am delighted with the outcome. The degree of involvement among NHS Trusts in getting the message across to the public – with over 150 events listed – was very positive indeed. It has also helped promote research awareness among staff within hospitals as the results from our follow-up survey show:
- 77% of people rated the overall campaign as “good” or “excellent”
- 67% of people said that campaign engagement within their Trust was either “good” or “excellent”
- 71% rated how well the campaign was received by patients as either “good” or “excellent”
- 80% said that the OK to ask campaign helped them to deliver some momentum for research awareness within their Trust, Network or organisation
- 98% said they would continue to promote the OK to ask message
But it’s clear from the extensive comments fed back to us (not published as part of the summary by the way) that there was some resistance to the campaign among clinicians. Some were concerned about raising false expectations. Others found it was difficult to signpost people appropriately when some of the tools we have such as the UK Clinical Trials Gateway (UKCTG) don’t yet support local interaction. A few thought the message was demeaning. They probably have not been to Pizza Express either.
It wasn’t a show-stopper – 7 out of 10 people said the campaign was good or excellent from a patient perspective versus 5-6 out of 10 saying the same for clinicians. However, it is something we need to consider as we develop ‘Ok to ask’ over few years; your views and thoughts will be welcome as ever. We will also have a greater opportunity to get it right from a clinician standpoint from this point onwards because we will have a longer lead-in time for the campaign itself. This year we turned it round in about 3 months from beginning to end which makes everything a whole lot more difficult. There will also be opportunities to build on the message at both local and national level in the meantime.
It would also be remiss of us not to recognise the wider context here, the difficulties for staff in the current environment when it comes to research. This was astutely identified by the Association of Medical Research Charities (AMRC) in its recently published vision for the NHS. It’s an excellent document. Part of its vision is that: ‘All NHS staff see the importance of research.’ And it lays out a good plan for ensuring that NHS staff are given the tools, support and opportunities to support the research agenda. Getting behind this call and making it happen is what I mean by putting ‘an arm around the shoulder’ I suppose.
That’s not to say that I do not share the frustration and anger people feel over the stubbornness of our professions in general: when it comes to them engaging with research but also in engaging their patients in research. It featured strongly in the Arthritis Research UK strategy meeting on stratified medicine I attended yesterday for instance. And in that arena it could be a real show-stopper.
But we should take hope from, and use, the fact that many clinicians quite clearly did get on board with the campaign as did the Boards and senior staff of many Trusts. This leadership is essential to changing behaviours.
As is the leadership you and many other patient, public, research and other health professional colleagues showed in making ‘Ok to ask’ a success. For that, I thank you most sincerely.
PS: By the way, it is actually true that I need an arm around the shoulder on occasion! :)
‘They can’t write for toffee.’ ‘They’ being scientists of course. But like most generalisations, this statement is utter tosh.
You only had to be at the ‘Access to Understanding’ awards (#A2UComp) at the British Library on Monday night to realise that. The lay summaries that I and my fellow judges had been asked to review were of a very high standard. The winner, Emma Pewsey, is to be commended for beating off such strong competition. Sharmila Nebhrajani (CEO at AMRC) has written an excellent AMRC blog today on the whole competition if you are interested in learning more.
I very much doubt that scientists are much worse than any other ‘professions’ when it comes to their writing skills. And, in terms of resonating with the intended audience, success is as much predicated by the mindset of their author as their ability with the pen.
When I was a Head of Communications there seemed no end of graduates rolling up for jobs who would be able to tell you who fronted what TV programme . But they couldn’t write a news release to save their life. It wasn’t their often poor grammar or punctuation that mattered. It was more their inability to identify the story or the most important facts to communicate to their audience.
If I am honest I think that if I pressed a switch tonight and every scientific paper instantly became freely available online and with a good lay summary it would not make much of a difference to public understanding.
That’s not to say that we should not do it. But I simply think we should be realistic. Not least because I sense that technology and consumer behaviour will take us to a different place entirely as they so often do. Even some speechwriters now start off by first thinking what their speech would look like if summarised in a tweet. Should we ask our scientists do the same and to use this as part of their paper title, for instance?’
In the meantime, if we are to reach a better place with the writing of lay summaries then our approach to them must be more consistent. I am delighted that INVOLVE has been working on some NIHR-wide guidance and tools that will see light of day shortly. But i personally would also like to see us incentivise good practice by, for instance, only releasing grant monies when a good lay summary is agreed. I have tried this on some senior researchers and they didn’t seem to think it was too barmy. Well, no barmier than anything else I’ve suggested.
It is interesting that scientists and writers share a common tool – the notebook. Their livelihoods both depend on it albeit in different ways. One to allow replication. The other to feed creativeness ( although this seems a little too simple a distinction). The investment in its completeness is a mark of professionalism.
And I think that for me is why the lay summary remains such an important component of how we communicate science. It is less about the product itself than the discipline and behaviours it encourages: clarity of thought, appreciation of one’s audience, belief and conviction in one’s ideas.
The lay summary is dead. Long live the lay summary.
First, a brief history of time in the Europe Union (EU).
It goes slowly.
For the last two years or so the European Commission has been consulting on plans to revise the European Clinical Trials Directive. The Directive has been in force since 2001. Researchers hate it. To be fair so do many patient organisations. The main complaint is that it slows down research into new drugs particularly in swotty Britain where we tend to do everything by the book and then bind it in gold leaf. That’s probably because of a) our schooling, b) we are brought up as subjects and, c) because of the same tendencies that make us enjoy queuing (select from the above as you see fit).
Over the summer the Commission published a draft proposal for new legislation or ‘Regulation’ for consultation and it is being considered by the European Parliament. Cue the usual confetti of responses from organisations and alliances of organisations stating what they do and don’t like. My basic summation of these responses thus far is that they think it’s much better because they won’t need any more gold leaf.
Last Thursday, the European Public Health Alliance (EPHA) – an association of non-governmental organisations from across Europe – issued its own revised policy position. It is to be applauded for being the only one I have seen this far which pushes the Commission hard to consider certain aspects of growing importance to patients in trials: the right to clear information; openness and transparency, and public involvement in all aspects of clinical trials. The following para taken from their website gives you a taster:
‘From this perspective it is also vital that clinical trials reflect the populations that are meant to benefit from them – for example women, older people and ethnic minorities – and that access to clinical trial data and reports is as open and transparent as possible, which implies full public disclosure in a central database to protect public health interests. Moreover, patients’ involvement in the process is essential; while this is foreseen in the present proposal, the extent to which patients will be able to influence the process still requires clarification.’
By contrast, this statement issued by UK commercial and non-commercial organisations could, and should, have taken a much stronger line on public involvement than it does. Particularly given many of the signatories, a number of whom I admire greatly and are highly supportive of the agenda. But public involvement is only really mentioned in reference to the Regulation’s proposed panel for reviewing trials. Such documents – jointly written and needing to be agreed by many – are often a difficult compromise. But this one does leave the impression that research is the dominant force, spinning a golden thread of ‘we know best.’
The UK has often set the international standard for public involvement in health research. So I hope this is not one of those examples of our country going to sleep on the job only to wake up and find that our European neighbours are way ahead of us. As I say, time passes slowly in Europe but not when you are asleep.
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.
My thanks to the Diabetes Research Network (DRN) for sending me their report ‘Improving public awareness of clinical research.’ Clinical research networks are at the ‘front-line’ in terms of encouraging people to take part in research and this report gives a good insight into some of the tools and strategies used by DRN. Others trying to do the same thing might find the report helpful in enabling them to shortcut a few steps. There’s also an honest appraisal of the hurdles they have had to overcome and those that remain in the way.
Similarly, the National Cancer Research Institute (NCRI) Consumer Liaison Group have today posted a new report on their website called ‘Action on Access.’ This is also stuffed with case studies and learning that will be useful to many. But there are also very good conclusions directed at commissioners, Trust Chief Executives, research funders and others. While I think about it the group have also posted a report on the impact of public and patient involvement and it’s here if you wish to take a look.
On the same theme, AMRC are holding a ‘Research in the NHS’ event on 10th December. Places can be booked here. I believe I am speaking but don’t let that put you off.
Fellow blogger Jo Brodie referred me to this posting by another blogger Ann Blandford looking at how the focus on ‘do no harm’ in research regulation, disincentivises researchers such that the system ends up doing no good either. Or that’s how I read it anyway. Ann talks about the need for ‘proportionate’ regulation which is the hot topic of the day. Only this afternoon I was discussing with colleagues how public engagement strategies for recruiting patients to research can often fall foul of the different interpretations and then stipulations put on them by research ethics committees. That’s surely one for the new HRA feasibility study as announced this week.
Less than two weeks to go until the INVOLVE annual conference and the conference issue of the Newsletter is now out. Please take a look. The INVOLVE blog will be going live soon as well. We have 450 delegates attending and a real buzz is gathering about the whole event.
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.
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.
Good Guardian blog yesterday giving a lay summary of the ‘open access’ debate vis a vis papers published in scientific journals. There’s also been a healthy exchange of letters in The Times this week but ironically that’s behind their paywall. However, at least The Times is available in all good newsagents at a reasonable price.
Unsurprisingly, I totally get and support the arguments in favour of open access. But inveterate blogger and public engagement in science expert, Alice Bell (blog home page here), twittered this morning that open access is more than just about publishing papers. Hear, hear!
I believe the arguments being made by research funders and others, that ‘open access’ has societal benefits, are sincerely held. But, at the same time, the debate does sometimes come across like a power struggle between the mighty and the mighty.
How good, indeed seismic would it be, were funders to use the same public interest arguments to ensure that the people they fund got their act together, not just about where they disseminate their research but how they disseminate it.
Public understanding of science will be marginally improved by better access to articles. Yet, it could be radically improved if we also saw a commitment to the writing of a good lay summary of their work and to see this appear with every published article. For some reason, funders have seemed reluctant to pay serious attention to this as an important tool to understanding science, its dissemination and impact. But it’s clearly in the public interest.
See the PatientsParticipate project for more.
Got to dash!