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The Shard went up (officially). And the NHS Commissioning Board Draft Mandate came down from on high. All on the same day. Add the odd torrential downpour with its associated misery and these could be Biblical times.
I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent phone signal when such momentous events occur. On this occasion I was taking part in the Third NIHR Experimental Medicine Research Training Camp; a three-day residential meeting where over 60 NIHR doctoral students were learning the art of science communication. By their own confession they were taken out of their comfort zone. No more so than when they had to test their ideas in front of our excellent lay advisory panel. It forced them to think differently, to re-interpret their knowledge and expertise from a public and patient viewpoint. But the outcome in terms of their plans and ideas was superlative.
So what about the NHS Commissioning Board Draft Mandate from the point of view of public and patient involvement in research?
Unsurprisingly most attention has been drawn to page 26 of the Mandate headed’Promoting growth, research and innovation’ which looks at the role of the Board in promoting research by:
- Working with research funders
- Improving adoption and spread of new technologies
- supporting patient participation in research
Objective 17 and associated Annex B set out more precisely how this will be achieved and measured. The commitment to measure increasing patient recruitment is important. It is my view that this data should not only be about participation rates (already available through the clinical research networks), but also the extent to which patients are being offered the opportunity to take part in research (a possible role for the Care Quality Commission (CQC) through its annual patient survey). Together, these measures would tell us much about the extent to which the NHS is realising its duties in terms of research and patient choice.
For what it is worth, my own view is that the real game-changer in the Mandate when it comes to participation, falls within the ‘Choice Framework’ set out in Annex D. For this begins to set – for the first time and in some detail – the expectation that patients should be offered the opportunity to take part in relelvant and appropriate research as part of their care and treatment. It gives them and us license to challenge the system to make that choice a reality. As will the reviewed and renewed NHS Constitution when it comes out in draft form this autumn. Or I hope it will anyway!
The less satisfying aspect of the Mandate is the weakness of its statements on public involvement – as National Voices has already pointed out. In fact, it is very poor indeed. I already have a growing sense of unease over the new corporacy which may be creeping over some Clinical Commissioning Groups (CCGs) as they tackle the issue of public involvement. A number of CCGs are clearly in the search for those with specialist expertise and skills, as opposed to finding those who can reflect and articulate the patient voice. Others, on the other hand, are doing their best to get it right. But it is difficult to get a cohesive picture of what is happening because the signals are intermittent and often broken-up.
So I would say this. It is important that we respond to the consultation on the Mandate to support and strengthen its statements about patient choice and research. But equally important is to hear people’s experiences about what is happening with public involvement locally, good and bad. For we must make the case that, in order to meet its objectives, the NHS Commissioning Board has to ensure a better foundation for public involvement than it has thus far.
Only if we provide space for patients to challenge the system will we see improvements in the way that care and treatment is provided and people’s choices honoured.
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.
On my train journey from Edinburgh this morning, I listened to a BBC Radio Scotland phone-in about the implications of Scottish independence. The intricacies of a possible de-coupling from the UK are fascinating – from the economy to people’s pensions, to the NHS.
I’ve yet to read an article written specifically about the pros and cons from a medical research or science point of view. But this is a good overview of the economic issues as recently appeared in the Financial Times. In terms of the day-to-day, though, I wonder just how much more of a difference formal ‘independence’ will make in some areas.
For the irony is that, for a good few years, the forums I am involved in have become well-versed in encompassing the devolved administrations and their points of view as if they are wholly independent. The discussion and negotiations are not always easy. Sometimes – well, quite often actually – colleagues look jealously upon the enlighted approach they are taking. But the upshot is that broad agreement is reached sooner or later and the various partners left to their own devices to how it is implemented. So the real issue is not about de-coupling. Rather it is how to ensure these different approaches remain linked to everyone’s benefit.
While away, I have intermittently followed the latest blows being traded over NHS reform. Mike Birtwhistle from MHP has blogged insightfully about the various politics behind the stance, or should I say different stances, of the medical professions.
How ironic it is that the Royal College of Physicians – who brought the BMA to heel to create the NHS in 1944 – is now being pressued by the BMA to ‘save the NHS.’ Or so the BMA would have us believe. The relationship between the two has never been an easy one. My sense is that the survival instincts of the Colleges – which are even greater than that of our own political parties – will come out on top. They will want to stay at the negotiating table come what may.
Meanwhile, the irony is that life with the NHS reforms goes on. Chris Ham, Chief Executive at the King’s Fund, wrote a blog last week which was much quoted for only one aspect, his comments about what the aforementioned medical professions and their latest salvos.
His other main observation was that, while the politics rev up again, the reforms continue apace in other ways, regardless of and without little need of legislation. And many, including Royal Colleges, position themselves rightly and astutely to ensure the reforms benefit their respective constituency – note this from the Royal College of Paediatrics and Child Health (RCPCH) about the new Children’s Forum.
In other sectors – medical research for instance – the debate during the parliamentary stages has been highly relevant, important and constructive. Much has been gained and much is still on the table. Its cross-party support can only be helpful as we reach the final stages of the legislative process. The potential impact on how the NHS supports research in the future is significant. So, for some, I am sure, it would be ironic if this gain were to fall along with the Bill. At the very least it would supposedly leave things in a bit of a pickle. But I doubt very much that will be the outcome, one way or the other.
If you wish to get up to speed with the latter debate ahead of the Report Stage of the Bill in the House of Lords have a look at the ever-comprehensive analysis on Becky’s Policy Pages.
You cluster if you want to…the single most important translational gap in UK clinical research today
A colleague of mine put up two slides at a meeting today which neatly encapsulated for me the key strategic – perhaps translational gap – in uk clinical research right now.
On the demand side, the first showed the key results from the Association of Medical Research Charities (AMRC) commissioned MORI poll of public attitudes to health research earlier this year. I quote:
“97% of the public believe that it’s important the NHS should support research into new treatments according to an Ipsos MORI poll published on Thursday 9 June. The poll, commissioned by the Association of Medical Research Charities (AMRC), Breast Cancer Campaign and the British Heart Foundation also shows that 92% of people believe it’s important for the NHS to support such research funded by charities.”
Then, on the supply side, these are three of the results from a recent Health Service Journal (HSJ) article
- 38% of clinical research professionals agreed that clinical research is part of their Trust’s planning
– 39% agreed that clinical research has a high priority in their NHS organisation’s strategy
– 61% agreed that clinical research is peripheral and driven by individuals in their organisation.
In essence what this means is that while the public appetite for health research is there, and good systems are now in place for making research happen, we are still depending on enthusiasts to get if off the ground in NHS organisations.
When the Government releases its Life Sciences package on 5th December, I’ll be judging it by how far it might go to closing this gap. You can have as many science clusters as you like but, as one famous political leader said: ‘you cluster if you want to, i’d rather spread the word instead.’
Or something like that.
Goodness me the nation’s health must be in peril if the Royal Colleges have kicked off their slippers and downed their pipes to emerge like Dad’s Army into the affray about the NHS reforms. All seems to rest now on those of their number who reside in the Upper House. How peculiarly English but ultimately unsatisfactory that it should come to this.
In the run up to today’s Second Reading debate of the Health and Social Care Bill, the hyperbole on both sides has been difficult if not impossible to avoid. Reading the papers feels more like a downhill ski slalom than an intellectual pursuit.
And yet, while I wish I could buy into the Independent’s middle-ground opinion that what we have witnessed with the NHS reforms is simply a failure of communication, I do feel as though a lot more is at stake than this. Heartwarmingly for me, it would seem a lot of people share this view on both sides of the debate.
It is with feelings akin to almost parental dismay that I recently learned that Julia Manning, Director of the right-leaning think-tank, 2020health.org, now blogs regularly for the Daily Mail. The ‘right’ badly needs a radical if not impactful voice on science and I hope 2020health.org will earn its stripes in due course. But Julia’s Daily Mail blog rather shot itself in the foot yesterday by saying – and I paraphrase – ‘we must not stop the Health and Social Care Bill because all the changes are underway anyway and everything will be in limbo.’ Her broadside simply served to underline how undemocratic the approach to the NHS reforms feels. And her unfair swipe at Evan Harris lacked tabloid panache.
Alternatively you could dip into or gorge upon The Guardian’s running commentary on the whole saga, including their live text-feed thingy of what is being said by whom right now. What would we do without the Guardian’s obsessive compulsive approach to these things? I have come to the conclusion that its editorial staff grew up on and rather miss the days when news junkies used to watch ceefax page 102. Occasionally, however there is a peach of an insight such as the one earlier today by Tony Blair’s former health adviser, Paul Corrigan.
If you wish to watch unadulterated coverage of the debate you can go to the parliamentlike.uk webcam here.
Meanwhile the GPs just keep on answering those surveys including the latest one from the Royal College of General Practitioners in which only 4% of their number believe that the NHS changes will result in better patient care. Not far away 84% of members of the Royal College of Psychiatrists want the Bill withdrawn – this after a group therapy session before which the level of despair was much greater. But it is a wonder that our medical colleagues have any time for patients given the number or surveys they are filling out.
If you want some of the serious stuff then Becky’s PolicyPages are their usual reliable self with the gen on the research concerns. But the penultimate word goes to National Voices (Ovarian Cancer Action has just become a member) with their five calls to Peers as the Bill heads for the vote. National Voices’ briefing to the Lords highlights five further changes the patient lobby wants to see:
- a definition of individual patient involvement
- commissioners taking advice from expert patients
- a statutory duty of candour
- strengthening HealthWatch England
- local HealthWatch organisations electing members of HealthWatch England.
I’m off to dinner in the Barry Room .
We are a nation that no longer knows when to put its rubbish bins out.
So I reflected, as I dragged our two overflowing wheelie bins back to their usual place. To be fair to Bromley Council, it’s not that they fail to pick-up our rubbish; just that no one can quite predict what sort of rubbish they are going to collect in any given week.
I won’t bore you with the details. Suffice to say that some months ago they changed the system of waste collection here – successfully ‘piloted’ with local residents I should add – so that various items would be picked-up on alternate weeks. Well, for the life of me, I and my neighbours have got it wrong at least 40% of the time. I wouldn’t mind that much but after hours toiling over separating tetra packs from the New Scientist it does get a bit irritating to see the bin men and women dump it all together in the back of a dustcart. As my mother would say – and she is usually right about most things: ‘it all goes down one way.’ But I do wonder if I am part of some sort of rather wicked observational study.
Such episodes in life do however serve as useful metaphors for larger trends at work. In this case, perhaps, it is the passing of what was once certain, fixed, reliable. Now I just sound like John Major don’t I?
Anyhow, enter stage centre-right, the NHS. September is upon us after another crummy August and our politicos have quickly rejoined battle over the health service reforms. The Sunday Times front page from yesterday suggesting that overseas companies are being primed to run hospitals (or should that be the other way round) left me unsettled to say the least. Notwithstanding the so-called ‘Listening Exercise’ prior to the summer, it really does feel as if the tectonic plates are shifting beneath the NHS and fast.
The BBC Online has a good overview of where the battle lines have been draw if you wish to look deeper and I wish that I had been able to attend this evening’s Stempra briefing and discussion on the Bill – perhaps someone will post a comment giving us a sense of what happened.
But I was struck by the passage in the BBC piece about the anticipated forensic scrutiny of the legislation when it gets to the House of Lords. Heavens knows it needs it. When I was a little closer to these things than I am now it was well-known that Peers were getting together regularly to examine and prise apart the Bill in preparation for its stages there.
This is the thing. If you are into your pure politics then I suspect you will be attracted by the likely rough and tumble during the party conference season and in the House of Commons come October. If, however, you are looking to throw your weight behind the forces that might ensure the reforms are changed for the better then I encourage you to assist our Peers in every way you can with good evidence and good briefing.
Otherwise, it will not be that the NHS fails to treat people in the future, rather that none of us will be able to predict which patients it will treat in any given week in any given part of the country.
PS: Apologies that the links are to ‘home pages’ but I can’t seem to use anything other than the WordPress recommended links on this computer.
The summer break has clearly done the Secretary of State for Health, Andrew Lansley, a world of good.
From beating a lone path as the libertarian Claudius in the face of a centralised health service, he has resurfaced this week as the man for all seasons to launch a competition for the best ideas for new mobile phone health applications. The public can also name their favourite health app. See also The Guardian today.
Good for him that’s what I say and what a good idea. The only criticism I have is that there is no money being put towards developing the winning ideas, no doubt because there’s none left after the NHS IT fiascos of late.
From The Guardian also comes an article in which the CEO of Cancer Research UK, Harpal KUmar, talks about this being a golden age for cancer research, as a presage to their next great push on clinical trials being launched next week.
One hopes that the brightest minds in the research community are putting the threads of these two stories together in potential entries to the Department of Health competition, apps that could be used as or as part of a clinical trial or, for instance, that patients could use to find out about trials – a sort of ‘clinical trials near me’ app. This certainly seems to be what is happening in the US as I have blogged before.
Being a mere consumer of (too) many apps and not a mobile phone app designer I can only vouch for the ‘simple is best’ view as to what works. So my favourite health app at the moment is ‘Stress Check’ designed by AIIR Consulting – the free version of which is basically a quick questionnaire which gives you a stress score and also allows you to track your stress levels over time.
Not wishing to incur the wrath of Ben Goldacre, the blurb for the app says it uses a research-based assessment tool but I’ve not checked this out to be honest.
I am more pleased to be honest that my stress score seems to have gone down from 75 to 63 in a month and not all because of my teepee holiday in Cornwall (actually I suspect it would have probably gone down more had I been on a holiday where everything was fitted i.e. bathroom, kitchen, children etc).
No, it may not have given me a deeper understanding of some of the causes of my stress but it has helped me to change my behaviour by a) engaging me b) giving me some stress management tips and c) by giving me a sense of progress. Quite simply, in helping me to focus on this potentially harmful aspect to my life it has done its job. That’s all I can say.
I suspect you have seen today’s news bulletins covering Macmillan Cancer Support’s report predicting a significant rise in the number of people who will get cancer. To quote the opening lines of their statement today:
Cancer rates are increasing at such a rate that research shows 42% of people who die in this country will have had a cancer diagnosis. And for most of them (64%), it is cancer which causes their death.
Macmillan calls for better services and support for those with cancer. Fergus Walsh on his BBC blog emphasises the need for people to take more personal responsibility for their health. Cancer Research UK has been quoted as also emphasising the prevention message saying that half of all cancers could be prevented by better diet, stopping smoking etc. They are all right of course. As is also the message that we need to continue to fund cancer research if we are to ultimately secure new and ever-better treatments.
Similar comments were made yesterday at the excellent All-Party Parliamentary Group on Cancer hearing about the impact on cancer of the NHS reforms. I am sure that some rule to do with Chatham Docks prevents me from directly reporting the comments by the panel – Peter Johnson from Cancer Research UK, Jennifer Dixon from Nuffield, Heather Nathan (patient) and Dr Steve Field (GP and Chair of the NHS Future Forum) – or audience. But hopefully their insights will be appropriately incorporated in the final report of the Group on Commissioning expected later this year.
For the moment then, just two thoughts of my own:
It is pretty evident that for many patients – and not just those with cancer – the opportunity to benefit from new treatments and trials is often dependent on their own strength, determination and gall. It should not be like this. There is still a gaping need for better information to be provided and for patients to be better supported by health professionals and others on their patient journey to remove the element of ‘chance’ in their care.
We need to overcome this notion that somehow research is outside the remit of service commissioning or commissioners. It has to be integrated with the decision-making that sits behind such activity. While the changes to the Health and Social Care Bill which will mean new duties on GPs etc with regard to promoting and using research are good news, how we ensure this happens in practice is the unanswered question as yet.
In the closing stages of the meeting the panel were asked to identify the one significant challenge and opportunity arising out of the reforms. The challenges ranged from ‘money’ to safeguarding continuous patterns of care for people. The opportunities include the development of IT systems that enable better care, to developing a more responsive system.
And if there is one positive from Macmillan’s report today it is perhaps that the increasing numbers of cancer patients will mean a greater pull on the system to meet their needs better.
…and in other news:
I was delighted to see the following statement on NIHR’s website about the fact that NIHR funding will be considered alongside Research Council funding in the Research Excellence Framework (REF) in 2014. The new guidance also states that applied and practice-based research must be assessed on an equal basis with other types of research. This will ensure full recognition for the clinical and applied research which NIHR funds. In other words it is a strategically very important news.
I’ve got a sneaky feeling that Andrew Lansley might be going to Cornwall on holiday giveh his overtures to the region about how the new funding allocations for the NHS will no longer penalise the county. And this is how The Guardian reported Andrew Lansley’s speech to the NHS Confederation yesterday. ∞
Here’s the BBC report on how the Health and Social Care Bill will now be scrutinised following the changes announced a few weeks ago. I think other reports have mentioned people’s criticisms of it going back to the committee stage for only ten days in all. ∞
To begin with, here’s more on that Pfizer story about use of mobile phone technology etc in clinical trials. It seems to have piqued an interest among many of you anyway.
Also on the subject of clinical trials, I was rather perplexed by this story running out of the NHS Confederation this morning. I’m delighted that the NHS Confederation are at last exercising their PR might in the name of research – it must have something to do with Mike Farrer’s move there as CEO. As you may know, he was previously the chief executive at the North West Strategic Health Authority which led the hallowed ‘NW Exemplar work on clinical trials.‘
The overall message of the piece about regulation standing in the way of clinical trials is also good. But I am sure the data/evidence they have put forward to support it, passed its sell-by-date a long time ago. If you look at the latest metrics for trials put out by the NIHR Clinical Research Network (CRN) Co-ordinating Centre, one gets an alternative and more up-to-date picture of an improving situation.
Much work is still to be done though.
The really striking bit in yesterday’s MORI survey by the Association of Medical Research Charities (AMRC) was that showing the degree to which patients would be willing to assist in research by participating in trials (72%) or letting researchers access their confidential records (80%). But you have to scroll down the page to see these results.
A bit like we expect patients to ask their GPs to do if they want to turn their willingness to take part in research into action. I am sure I saw an academic paper a few weeks ago which heralded the 39% or equivalent GP practices that were active in recruiting patients for trials in Eastern England. All I could think of was…what about those people living in the catchment areas of the other 61%. Perhaps their GPs still use scrolls instead of prescriptions.
So grist to our mill in making sure the Health and Social Care Bill supports the things that are already being done by NIHR and others to change this.
A reminder that David Cameron will be making five pledges on the NHS in a ‘keynote’ expected this week (possibly tomorrow (Tuesday)). Things like..there will be no privatisation, and an end to waiting lists etc.
The Economist’s ‘Leviathan’ blog - which is always worth a look – takes a rather derogatory view of the Prime Minister’s five-a-day prescription, calling it mood music.
I read it as a sortof high-five to the NHS to rebuild confidence. But it will be the stuff between the lines that we’ll need to look out for, since this will hint at the conclusions drawn after the recent ‘listening exercise.’
As a self-confessed member of the worried well, I ask that people think carefully before they throw strange words at me. Particularly on the day of a regular visit to my ‘prescription-happy’ doctor.
A colleague asked me this morning how my interregnum was going. It sent me into a momentary panic. Is it treatable I wondered anxiously? Then I asked myself if I’d been asleep longer than I thought during which time there had been an overnight interregnum akin to other moments in history such as the Spanish Inquisition.
Finally I realised she was referring to my being between two jobs – I start at Ovarian Cancer Action on Monday. Phew.
The final days of the Department of Health’s listening exercise have seen a last minute flurry of submissions. I read on BBC News Online that over 15,000 comments have been made and 750 letters received by some poor official who only three months ago had an empty in-tray. The Association of Medical Research Charities’ (AMRC) submission on behalf of the charity sector can be found here – and very good it is too. Elsewhere the King’s Fund has kept up its usual pace of incisive criticism with a report on accountability in the proposed new NHS set-up.
Indeed, accountability is a theme that has resonated strongly in these final days. Mark Walport, Director of the Wellcome Trust, referred to it in his Times article yesterday. The Daily Telegraph reports this morning that the inclusion of patients and the public in the management boards overseeing GP consortia, is likely to be one of the key recommendations that the NHS Future Forum chaired by Steve Field will make when it reports to the Cabinet shortly.
That has to be right. There seems to be an inherent contradiction between Big Society politics and the NHS reforms if the public are not to be given greater access and opportunity to influence and shape how health care is delivered in their neighbourhood. Of course, that’s always assuming you believe in the Big Society mantra.
But I do understand the difficulties for the Government in getting the composition of these bodies right given the equally understandable clamour from all and sundry to be represented. I see the nurses are the latest to make their pitch today. However, patient and public representation should be one of those ‘red lines’ for charities and the voluntary sector on which we should not give way in the months ahead.
If you are planning a holiday around developments with the NHS reforms then you may wish to take a look at the Financial Times article today which speculates about the timetable from here onwards.
Not long now before we’ll find out how much of its original plans the Government decides to alter or whether it is intent on flying in the face of its own self-imposed interregnum.
Footnote: By the way, I heard an interesting bit of ‘Whitehall’ news last week which is that the Office for the Strategic Co-ordination for Health Research (OSCHR) has moved offices from its HM Treasury base (its home for the last few years) and is now located in the Department of Health. Happy to be corrected if I am wrong.
The word on the street is that the Coalition Government is going back to first principles in its review of the proposals in the Health and Social Care Bill.
As each day passes, the ‘natural break’ begins to feel more like gardening leave for a piece of legislation that was supposed to be one of the Government’s flagship Bills. At the moment it looks possible that the Bill will be re-committed in the autumn. I assume that this will push back the timing on the ‘second session’ of parliament legislation as well – this second Bill is significant to health research because it will deal with changes to the way in which research is regulated.
So, from a flying start earlier in the year, it feels that the whole thing is becoming akin to a set of roadworks – the bollards are omnipresent as is the hole in the road and the queue of traffic but not much else is visible in terms of progress.
Still we should be pleased that the Government is at least prepared to radically re-think its plans. This week, you may have seen, 40 charities issued a statement urging there to be a stronger patient voice in the plans (quick plea to press officers – if you are going to issue something to the media, please make it available on your website the same day, I could not find it on any of the charity websites I checked).
And Cancer Research UK also held a very well attended briefing for MPs and others on the research aspects of the Bill.
This is going to run and run and run…
It is International Clinical Trials Day today and The Cochrane Library has worked with the UK Medical Research Council’s Network of Hubs for Trials Methodology Research to produce a set of new podcasts about clinical trials – well worth a listen.
There was a conference in Vienna this morning organised by the European Clinical Research Infrastructure Network (ECRIN) (Yes, you’ve missed that), and it is perhaps worth reminding everyone that there is an excellent information leaflet and booklet on clinical trials that was produced by the UK Clinical Research Collaboration (UKCRC) some years ago with AMRC’s help.
Some local research centres are also doing special awareness days to highlight their work – for instance, this one in Bath. And I thought this was a rather nice milestone being reported by the Leeds Cancer Research UK Centre to mark the day – it has recruited 2,000 patients to trials in its first year of operation.
And if, like me, you intend to hold a roundtable debate with your family this evening about the way forward for the clinical trial you might wish to use this as fodder.
Yesterday while I was at the INVOLVE meeting saying goodbye to its current Chair, Sir Nick Partridge, Mike Rawlins (Chair of the Academy of Medical Science’s Review of Research Regulation), John Bell (President of the Academy) and Mark Walport (Director of the Wellcome Trust) were giving a press briefing on their concerns about the impact of the Health and Social Care Bill. Mark Walport was on The Today programme this morning.
But if you are in danger of going to sleep, have a look at Anaesthesia UK and read the comments made in a speech by Professor Michael Rees, Co-Chair of the BMA’s Medical Academic Staff Committee, about how the NHS reforms are the latest in a long line of recent develops which now threaten to destablise ‘medical academia.’
The Today programme reported that the Department of Health had issued a statement saying the Wellcome Trust’s fears were unfounded. I doubt that very much indeed. Anyway, we’ll be going at the issue again in a week or so with some added oomph.
Finally, my deepest apologies to Y-Touring for not getting to their special film showing of ‘Mind the Gap.‘ I was mopping-up loose ends and frayed strands.
Welcome back to those of you who left the rest of us to run the country for two weeks.
I must say that I spent the Bank Holiday weekend in a verily good mood having had a quick peek at the results of our annual member survey. This showed that 98% of our members say we meet their needs and 93% rated our services as good or very good. With results like that I imagine there will be pressure to call in the UN inspectors next time. But given that I am on to pastures new shortly, it’s nice to know I haven’t wreaked havoc and destruction on this fine Association over the last five years.
As my team will tell you, sad person that I am, I live and breathe surveys. I even survey my children regularly on what they want to do/eat/watch/visit etc so bad has it got. But there is one survey that I have been eagerly awaiting for, for some weeks…
The 2011IPSOS Mori Public Attitudes to Science Survey pubished today makes for fascinating reading. In fact I think it is one of those pieces of work that merits much deeper study and analyses over the coming months. Naturally, the PR around it has concentrated on the good news aspects – that 86% of people are amazed by the achievements of science. But, fair game, there has also been a lot in the coverage which has noted the public engagement concerns that come through. The Department for Business, Innovation and Skills news release is here for good measure.
You’ll see that the Science Minister, David Willetts, has responded to this latter challenge – and it is a challenge – by re-iterating his commitment to public engagement. The news release goes on to refer to a number of ongoing programmes which are being funded by the Government. But c’mon David, you can do better than that. These surveys should be the basis if not the prompt for some strategic thinking by the Government. Perhaps it could even be a good first topic for the recomposed Council for Science and Technology (CST) when it next meets. Anyway, the point is, this is news we should use.
In that vein, I noticed a few nuggets of interest that are worthy of further consideration by my own sector:
That only 17% identified charities – or even universities for that matter – as funders of research…is a little disappointing. But the fact that no respondents saw the NHS as a funder of research is simply worrying. However, it doesn’t explain whether they see research as an important activity of the NHS which is a different sort of question.
I was struck by the huge amount of data and discussion about public perceptions around science regulation. That 88% of people feel regulators should communicate and engage with the public sends a strong message to whoever is going to lead the new Health Research Agency (HRA). It also debunks some of the things I have said previouly that a new HRA shouldn’t go OTT on public engagement.
The low understanding of stem cell research and clinical trials suggests we have much more to do to underline the importance of both to indivuals, as well as to the the country’s overall wealth and health.
That people tend to trust scientists funded by universities (83%) and the charities (76%) most is something that I suppose those of us in these sectors can feel pleased about. But lower response rates for the private sector will not serve us well in the long-term. We all need to communicate the important role these valued partners play.
Inevitably the reactions to the survey so far have pinpointed the ‘engagement gap’ that exists between the 66% of people who say scientists should consult the public more, and the more than half who say they are not interested in being involved. But, and this is where can surveys frustrate more than they illuminate, it would be helpful to know what might spark their involvement.
The latter point is the perennial concern for those interested in public engagement. How we choose to interpret it is critical. The detractors of public engagement often point to it as the reason for less effort. I see it as the reason for more. Engagement is often about ensuring that people have ‘access and opportunity,’ it is rarely about marshalling people just to get some satisfying numbers about attendance at the end. Indeed, if interpreted in the latter way, I think we ultimately set ourselves up for failure.
What this survey tells us is that, while we might rejoice in some of its conclusions, we need to think more deeply and work much harder at making science meaningful to, and inclusive of, its many publics.
The NHS seems to be dominating my life this week. Quite apart from the news headlines, it has involved two visits to the doctors and a blood test so far ..but I am on the mend I am pleased to report. All I can say is, a 45 minute wait for a blood test and excellent advice from my GP surgery receptionist (the real power in the NHS as you all know) leads me as usual to a personal conclusion about how good the service is. The conundrum is why we are all so easily convinced that it is not by the time we get home.
In the meantime, as you know, I have a blue and yellow phone in my lounge. This is so I can take direct calls from the Coalition Government Ministerial team at the Department of Health about pressing issues of state (and, yes, I have a red phone as well before people accuse me of bias!). Now that ‘The Killing’ is over I have found I have more time than ever to provide wise counsel.
So I was pleased that my suggestion of a summit (mentioned in this blog a few days ago) has been so speedily (part) adopted as reported in the FT online this afternoon. It says that a number of ‘expert panels’ will look at the reforms with a fresh eye. But can anyone tell me why there isn’t one on research? Perhaps the phone went out at that moment in the call, I can not remember. Anyway, the Department of Health news release is here. The whole exercise is being called the NHS Future Forum and is going to be Chaired by Birmingham GP, Steve Field.
Looking at the strands, I absoluteoly get the first three. However, the fourth (about health professionals advice influencing patient care) seemed a little thin although it is hard to tell fully without seeing the terms of reference.
So I was going to call the Department when I realised that, as it was set-up some months ago, I can only take incoming calls from them. I’ll let you know when it can make outgoing calls as well as part of the new Department listening exercise.
I really would encourage you to read this morning’s article in The Guardian about the impact of the NHS reforms on doctor expertise and research. Its the first article that I’ve seen thus far which really conveys the message about health research that AMRC has been trying to put across and on which we anticipate stepping up our activity as the Health and Social Care Bill heads into the Lords.
It also feels like a significant piece because of the intervention of the President of the Royal College of Physicians, Sir Richard Thompson. This is the profession’s voice as opposed to the ‘union’ voice as articulated by the British Medical Association (BMA).
At our Science Communication Awards on Tuesday night I got into quite an interesting conversation with some of our guests about the possible implications for research of an NHS reform package which is essentially as much about greater ‘localism’ as it is about establishing a regulated market.
One of the perennial concerns that AMRC often has to deal with is that of small local charities raising money for research taking place at their local hospital or by a doctor who perhaps cared for a loved-one. It is not the raising of funds that is necessarily the problem. Indeed, it is important that we do not deter such local passion and conviction. No, it is the fact that such money is being raised and then distributed in a parochial way; that such local charities very rarely use independent external review (peer review) to ensure they are funding the best science.
That is why – knowing also that administering peer review is not easy or without associated costs – we try our hardest to encourage such organisations to buddy-up with other charities that do have such systems in place or find some way of routing funds to research charities while retaining some sort of footprint on it.
Who is to say that in the new NHS, we might not see GP consortia actively encouraging such local charity connections in the name of ‘so-called research’ – superficially beneficial but in the long-term pretty disastrous.
I begin with a public information announcement….If you are following the debate about the Health and Social Care Bill then you really must come to AMRC’s workshop on 29th March to discuss its impact on research and what’s to be done about it.
If it is anything like the All-Party Parliamentary Group on Medical Research dinner on 29th March then it will be well worth your while attending. Emma Greenwood from Cancer Research UK has done a quick write-up on the dinner and the ‘official’ record will follow in due course.
Yesterday I wrote about the HEFCE announcement on the weighting for ‘impact’ in the Research Excellence Framework (REF). I was pleased today when one of my sharp-eyed team (of which I have several hundred here as you know) noticed this workshop being run by the National Co-ordinating Centre for Public Engagement at the invitation of HEFCE.
It’s aim is to inform the the eventual guidance to universities on this part of the REF. If a side-product of REF is the development of public engagement into a more robust discipline it will be a good thing.
I see the Russell Group put out a statement yesterday saying 20% was still too much but The Guardian’s article probably gives the best overview of where the sentiments are across the research sector. As I say, personally, I think HEFCE has fallen in about the right place for this first go and I am sure we will learn a considerable amount from it.
And lastly, since I am still loosely on the subject of public engagement I wanted to highly commend an excellent report by NCVO which is out today. Entitled Participation: trends, facts and figures it gives an absorbing and detailed insight into public participation in civic society in the UK. Science is not mentioned but it will give those that believe the British have ‘switched-off’ something to think about.