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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.
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.
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.
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.
Over the holidays I caught a BBC Radio 4 item about the days of the touch typist. It was one of those gems of broadcasting which looked through a narrow lens to tell the listener much about how the world has changed. It also brought back many memories of my time as a messenger at the old Department of Education delivering brown envelopes – many of them with a red flag meaning it was from the Minister’s office – to the typing pool. About the same time my Dad (who was a schools inspector) got one of the first computers which sat in the corner of his office at the DofE in Arthur C Clarke fashion. Indeed, I am not too sure who was more afraid of it – him or me.
Since then there has been an ‘information revolution’ of course, And it just so happens that this is the title of the Department of Health consultation about information use and access in the health service to which AMRC has responded today . We have made the following key points:
- Research is central to the information revolution’s aspiration of delivering broad benefits to patients and society through improving access to information.
- We welcome the government’s ambition that by 2015 “The quality and scope of information available for analysis and research will be considerably higher, more comprehensive and based on accurate recording.” and urge the government to work with us to ensure the information revolution can deliver this
- Confidentiality and security must be central to the revolution to underpin patient support for the use of their data
- Issues around the use of identifiable patient information in research must be addressed.
- We urge that the recommendations of the Data Sharing Review and the ongoing work of the Research Capability Programme and Health Research Support Service be included in this strategy.
- More focus is needed on informing patients to understand how their data will be used and supporting them to find out about research opportunities open to them.
The truth of the matteris that good information useage and good communication rely on sound leadership from the top – in this case Ministers.
As we finalised our response this week, the irony was not lost on me that the Department should be seeking views on this issue shortly after a Christmas period in which it was roundly criticised for not pursuing a public information campaign on flu vaccination. Why is it that, in this information age, all Governments wantonly cut back on communications, marketing and information activities? Ultimatelyit can only short-change patients.
I sometimes think that when politicians become Ministers they forget that they have become heads of ‘corporate’ beings. Good communications is vital to whatever service their Department is delivering. They neglect it at their peril – a lesson learnt by most businesses long ago.
For those wanting to get a grasp of some of the issues around the NHS White Paper ‘Equity and Excellence: Liberating the NHS’ of which the ‘Information Revolution’ is just one aspect, I encourage you to read yesterday’s House of Lords debate. What would we do without the Upper House I ask myself?
It being the end of the week I should perhaps mention several other interesting bits of news from the last five days…
First, the data sharing agreement announced by the Wellcome Trust and other research funders.
Second, a union of national importance on the scale of William and Kate it may not be, but this week the Association of British Healthcare Industries (ABHI), Association of British Pharmaceutical Industries (ABPI), BioIndustry Association and British In Vitro Diagnostics Association (BIVDA) announced the formation of LifeSciences UK to facilitate joint-working between different parts of the healthcare industry and strengthen their voice with Government.
And, third, this item about Cancer Research UK setting up a c-team of experts composed of four world-class research groups to launch a new blitz on cancer by targeting rogue stem cells that cause tumours to spread and become untreatable.
That’s it this week from the A-team.
Some of you may know that today was being dubbed ‘Super Wednesday’ by some because today is the day that the Department of Health has set out its response to the consultation on the NHS White Paper ‘Equity and Excellence: Liberating the NHS.‘
The National Institute for Health Research (NIHR) has very helpfully published an overview of all the statements in the next steps document relevant to research.
What do I make of it? Well, in the general scheme of policy this was never going to be ‘super’ anything. This document is functional in tone – it bridges us from what was in the white paper to what will appear in the legislation in the New Year (talk is, it will be January some time). And as you read it is becomes obvious pretty quickly that there is much detail still to be worked through and plenty of opportunity for probing amendments during the passage of the legislation to tease out the ‘what’ and the ‘how.’ That’s fair enough in a plan this large and I think most will be pleased at the Government’s decision to take longer over some of the changes.
In terms of the research relevant bits, it makes ample reference to the spending review settlement and the ongoing regulatory review but does not seem to say a great deal more on some of the mechanics for supporting research through the tarriff system. However, what it does do – and I’m delighted about this – is confirm that the legislation will place explicit duties with respect to research on the new NHS Commissioning Board and economic regulator (‘Monitor). This includes, in the case of the former, the promotion of involvement in research which is also good news. That research will be led from the top in this way makes me optimistic that the momentum on research will not be lost in the changes.
In addition, I thought this was a particularly important statement:
“Monitor will also have explicit duties to have regard to the need to promote research and investment by providers, and to the need to secure continuous improvement in the quality of services”. (para 6.61)
As a colleague within NHS research recently said to me, if Trusts/providers are to engage with, and consider research as part of, their core role then they must see it as part and parcel of the way they are being regulated and monitored. But more importantly,that making this connection with the quality agenda will resonate more strongly with Trust Boards than arguments about the difference made to their bottom line by undertaking research. It is quality – good or bad – that makes the average director of any service-focused organisation stand up and take notice, they said.
‘Healthy Lives, Healthy People,’ the White Paper on public health has been published and is available on the Department of Health website.
The news release sets out the Secretary of State’s ‘ladder of intervention’ – from the rather refreshingly titled ‘do nothing’ up to ‘eliminate choice altogether’ – which sound like the different states of readiness one might find in one of the armed services.
Public health will have a ring-fenced budget and the money will be straddled across local authorities (who will be the employers of Directors of Public Health) and a new national organisation ‘Public Health England.’
Public Health England will set outcome measures for public health and a new health premium will be awarded in areas according to progress made. Public Health England will also be the repository of best practice and evidence and negotiate the new responsibility deal on public health between different partners including charities and industry.
You get the picture, if anything this is more about how we organise ourselves to deliver better public health than the interventions themselves.
Last night I said my mind would necessarily be focused on what the document says about public health research. If the NHS white paper is anything to go by, my sense after a quick skim is that the intention is to see research embedded in how the new organisations do things rather than separate from or parallel too.
But, in my opinion, the white paper also expresses a clear intent to beef-up delivery in public health research and strengthen the evidence-base for public health actions with the setting up of a new NIHR School for Public Health Research. A new Policy Research Unit on Behaviour and Health will be established within the National Institute for Health Research (NIHR) and Public Health England will be expected to properly resource research into interventions happening outside the NHS. Finally, it says that NIHR, Public Health England and others will work together to identify research priorities.
All this seems a positive change to the landscape. I’m off to see which ‘level of intrusion’ I need to implement with my team.
If you refuse to walk under, or indeed climb, ladders then this blog is not for you.
The public health white paper is to be launched tomorrow (Tuesday). There has been much trailing of various proposals that will likely appear in the document – from providing vouchers to school children who walk to school, to a new inclusion board to help improve the public health of marginalised communities and restrictions on cheap alcohol.
The Secretary of State for Health, Andrew Lansley, talked of a ‘ladder of intervention’ when he was interviewed about the white paper at the weekend. In other words, the regulatory touch will be light and interventions carefully chosen. Nonetheless it will be intriguing to see the balance the Government has decided to strike between ‘aunty nudge’ and ‘nanny state.’ The last public health white paper was in 2004 and I seem to remember it being greeted with a chorus of disapproval that Government was veering too much towards the latter. The debate then was dominated by arguments over whether to ban smoking in public places.
Whether intended or not, the use of the ladder metaphor by Lansley is coincidentally rather interesting given what I think will be the tone and style of tomorrow’s white paper. Laddering is a methodology used in marketing to identify what attributes in a product appeal to the values of the consumer and attracts them to it. I suspect that the overriding approach in the white paper will likewise be about identifying methods by which to incentivise rather than compel the right behaviour changes. Where interventions are proposed they might well be in those areas that seem more black and white to the public – putting cigarettes into plain packgaing for instance.
However, my day job means I will necessarily search to see what the document says, if anything about public health research. When the UK Clinical Research Collaboration (UKCRC) produced its 2006 Health Research Analysis of the 11 largest public funders in the UK it showed that only 2.5% of spend went on ‘prevention.’ When the Office for Strategic Co-ordination of Health Research (OSCHR) was set up about 18 months or so later one of its three sub-boards was focused on public health (the others were on e-health and translational research). The public health one took longer to start and I am not clear quite where its work has got too although my understanding is that it has found the going hard. if you want more on the research picture you might want to have a look at this analysis of public health research across the EU available on the Faculty of Public Health website.
Notwithstanding the work of this body, the need for a strategy on public health research open to scrutiny seems long overdue and it is one where the funding and expertise of medical research charities with their knowledge of patients could play a major role. So. here’s hoping that the white paper sees public health research climb the ladder rather than snake further downwards in the order of priorities.
I thought you may be interested in this extract from the Health Minister, Earl Howe’s, speech to out AGM on Wednesday:
It also gives me pleasure to note [that] AMRC member expenditure on research having exceeded £1 billion for the year for the first time. Given the economic circumstances, I think this is something about which you should all feel immensely proud.
Indeed, that feeling of pride should be shared by everyone involved in medical research.
Since the NHS was established in 1948, research has brought incalculable benefits for patients. Treatments have been improved. Inequalities have been reduced. Productivity has been increased.
The contribution made by medical research charities in facilitating these benefits has been, and continues to be, enormous. The lives of people with wide-ranging needs – those with mental illness, long-term conditions, dementia – change because of the work done by the organisations represented in this room.
The coalition greatly values the efforts and dedication of all involved: from those who raise money through sponsored activities, to those who plan and implement strategy. For that to still be happening during a time of economic uncertainty is truly heartwarming.
Together with funders and donors in the public and private sectors, research charities have helped place this nation at the forefront of medical research. Currently, the UK ranks second to the USA in share of world citations to clinical papers.
And it is our job to support the research community in its efforts.
In 1991, four years after the AMRC was established, it was a Conservative government that set up the NHS Research and Development programme. I was but a humble transport whip back then.
Now, nineteen years later, the commitment of the coalition government to health research has been emphasised both in the Strategic Spending Review and in our White Paper, “Equity and Excellence: Liberating the NHS”.
It’s on record. It’s there for everyone to see. Because we know how central research is to every aspect of the NHS.
But of course, commitment is nothing without actual progress. So what can you, the people in this room, expect to see from us? How will we enable the research community to keep on innovating?
To start off, the coalition will demonstrate its dedication by increasing spending on health research in real terms over the next four years.
Some may question the wisdom of this increase, given funds are so tight. But to them I say – this is precisely the time where innovation, investigation and invention becomes most valuable.
Research saves money. I get the impression I may be preaching to the converted, eulogising medical research with the Association of Medical Research Charities. But it’s true. It allows us to identify new ways of preventing, diagnosing and treating disease. It is essential if we are to increase the quality and productivity of the NHS, which are, after all, the best ways of making efficiency savings.
From the extra funding, we will provide support to the National Institute for Health Research so it can play a full role in pulling basic scientific advances into tangible benefits for patients and the economy.
We are also providing £220 million of capital funding for the UK Centre for Medical Research and Innovation. I attended the signing ceremony the other day and am tremendously excited about the venture. The Centre is due to open in 2015. It will help drive forward the prevention treatment of disease by researching biology, developing technologies and engaging with the public.
The Department for Business, Innovation and Skills will ensure that Medical Research Council expenditure is maintained in real terms, ensuring total health research funding will increase across all sectors.
And through the intrinsic bond between the NHS and universities, the National Institute for Health Research – NIHR – is turning laboratory-based discoveries into cutting-edge treatments that make a real difference to people’s lives. Through the internationally-recognised Biomedical Research Centres and Units, the NIHR is helping translate pure research into practical success.
That is something particularly relevant to us here today. I know that 37% of all studies supported through the NIHR Clinical Research Network are funded by AMRC members. I applaud your input in this work.
Earlier this year I visited one of these Units at Moorfield Eye Hospital. The quality and inventiveness of the work I saw was quite staggering. Amongst other things, I was shown the projects currently being developed by NIHR-supported teams on glaucoma. They were developing ways to identify glaucoma sooner, treat it better and research it more thoroughly than ever before.
This work is invaluable. So the White Paper explicitly states that we will continue to promote the role of Biomedical Research Centres and Units, Academic Health Science Centres and Collaborations for Leadership in Applied Health Research and Care, to develop research and turn it into improvements in education and patient care.
Of course, for this to happen, there need to be efficient ways for innovations to reach the patients that need them. This must be across the NHS.
That is the difference, I think, between invention and innovation – successful application.
It is crucial that best practice, innovative ways of working and new technologies are not only identified and adopted locally, but are shared and spread across the NHS. Our challenge – both mine and yours – is to achieve the systematic adoption and diffusion of innovation at pace and scale. To make the NHS a true champion of innovation.
This means we must not only enable innovation, but also encourage a climate in which adoption of innovation is welcomed. In which people believe innovation will improve their lives and their work.
My department will be focusing on greater decentralisation, greater responsibility for GPs and patients and a Big Society. This will help create incentives to encourage the systematic adoption of innovation, empowering patients and society by putting them in control. It will create a ‘pull’ – a demand – for new ideas and technologies as well as ‘push’ – a supply.
We want to encourage the uptake of new medicines. So we have developed new national metrics and more are in the pipeline. These metrics will show clinicians what their international peers are prescribing.
And we will reform the payments and incentives system, concentrating more on outcomes. This will not be easy. Value is not easily defined. But we will work with patients, and we will work with clinicians, and we will work with industry and charities, to define what the incentives will be.
The fact is, innovation is booming.
Regional Innovation Funds generated nearly 2,000 applications this year, with productivity measurements suggesting projects achieving returns on investments of between 60 and 2600%.
A recent independent study from the Kings Fund and Innovation Unit reported that innovation now seen as ‘core business’ for the NHS, specifically at board level.
And of course there are the Expos. Expo 2009 was a great success and Expo 2011 in March will be even bigger and better.
And yet there is still more we can do.
Recently, the UK has gained something of an unwanted reputation as the regulatory capital of the world. A reputation for complexity. For inconsistency. For convolution.
It is unacceptable to me and to the coalition that research in this country could be hindered by form-filling and box-ticking.
We have asked the Academy of Medical Sciences to conduct an independent review of the regulation and governance of medical research. It will report soon.
When it does, we will look at the legislation and bureaucracy that affects medical research and radically simplify it. To allow you, the researchers, the freedom from paperwork that will best support our shared goals.
We are considering a national research regulator and expect the Academy’s working group to make detailed recommendations about that.
We also want to reduce the regulatory burden that charities face when they engage in research. The National Research Ethics Service and the National Institute for Health Research have already made some headway in harmonising different processes. I want to thank them what they have done.
This Government values the input of charities in medical research. It creates jobs, it shares knowledge and it ensures patients receive access to the highest-quality treatment, preventative care and outcomes.
We are committed to a future in which research continues as a core function of the NHS. This commitment is written down in the White Paper, where everyone can see it.
My department already works closely with your organisations. I look forward to that relationship continuing and developing to achieve what is our joint aim – to have health outcomes as good as any in the world.
I have just returned from the Financial Times’ offices, where I was the guest for their regular science podcast hosted by Clive Cookson and Andrew Jack (it will appear here later today). The theme of the discussion was ‘Selling Sickness.’ Andrew was reporting on a recent conference of the same name that took place last month in Holland. The programme and presentations from the conference can be found here and they made interesting reading as I was prepping last night.
For those who don’t know, ‘Selling Sickness’ is a term used to describe the way in which the pharmaceutical industry and other companies are said to collude with medicine and science to create markets for new and existing products. The claim is that they do this either by exaggerating the existence of a condition, fashioning a disease out of what one might call the ‘unbearable ordinariness of being,’ or playing on the anxieties of both the worried well and unwell. Sometimes all three of course, as I am sure many of us have witnessed.
It is a contentious issue and the discussion this morning was interesting. That companies should be able to hop, skip and jump through the established routes of defining disease in order to market and sell products should be a concern to us all.
From a patient and medical research charity perspective the worry is more specific. It is that such antics lead the genuinely-ill down the wrong road with regard to treatment, while encouraging the genuinely-well to believe the worst and follow a path that means taking unnecessary risks with their health. Only through a combination of greater openness, better regulation and also patient champions working with and within companies can we perhaps avoid the worst vestiges of this.
But it also says something about deep trends and changes in our culture and society. One in which the expectation is set that we must all carry some vestige of ill-health or impending sickness if we are to be ‘complete,’ to be able to exercise choice in its fullest sense in a world increasingly run on fear and neurosis.
The irony of course is that, as individuals, we are not good at taking medicine which is right for us. Also, that people are generally lacking in the support needed to alter their treatment regime if and when their condition changes. The challenge is not so much medicines wastage but how to ensure more effective use of existing medicines. That certainly seems to be the evidence published toay by the York Health Economics Consortium and The School of Pharmacy, UCL.
This study shows that waste from primary care prescriptions amounts to about £300 million a year. As the authors point out, in the context of an £8 billion drugs bill in the UK, that’s not bad. Indeed, the report is at pains to say that the NHS is quite robust at tackling waste i.e the stuff that is thrown away. The real issue, it says, is ensuring more effective use of medicine:
‘The new research finds that up to £500 million of extra value could be generated in just five therapeutic areas (asthma, diabetes, raised blood pressure, vascular disease and the care of people with schizophrenia) if medicines were used in an optimal manner,’ it says.
Pharma Times is reporting today that Earl Howe (who is speaking at our AGM tomorrow) last week backed the idea of a new medicines service attached to pharmacies to help improve medicines adherence when he spoke at the Pharmaceutical Services Negotiating Committee annual dinner (I miss all the best gigs in town).
Moving swiftly on, the research by the York and London teams could not be more timely. For the last six months I have been involved in a fascinating piece of work stemming from the Royal College of Physicians report last year: ‘Innovating for health: Patients, physicians, the pharmaceutical industry and the NHS.’ Following its report, the College established a ‘Medicines Forum’ which was charged with looking at how the report’s recommendations could be taken forward. This was to be done with the help of some sub-groups focusing on specific streams of work.
I am on what is called the patient sub-group – chaired by Harry Cayton and composed of patient representatives, pharmacists, GPs, regulators and others including Professor David Taylor from the School of Pharmacy at UCL. We have chosen to focus on two issues: medicines concordance and; public involvement in research. We are nearing the end of a series of enrgossing evidence sessions with a wide variety of people and organisations – from Boots the Chemist to the Royal College of Pharmacists, from the Science Media Centre to some of my members such as the Motor Neurone Disease (MND) Association – and will report to the College shortly ahead of a conference it is doing in February.
I feel that we are arriving at a good diagnosis of why people don’t take their medicines (it is as much to do with the quality of interaction with a health professional as with the quality of information). We are now turning our minds to some solutions and recommendations. I am sure that the need for more investigation and research into this issue will be one of them, and I hope that my members will take up the challenge as I know some already have.
But it has also highlighted for me that, in the endless discussions about translational gaps in getting science from the bench to the bedside, we have spent far too little energy in the UK exploring how to ensure that it gets from the bedside to the, well, patient’s inside? A simple process one would have thought. But many influences can determine whether it happens fully, partially or not at all; I have already mentioned just two. In the drive to create and develop medicines that meet real need, we must not forget the need to pay greater attention to this final, translational gap.
That’s a long way from selling sickness I know. But much more in the public interest, wouldn’t you say?
The news earlier this week that the National Institute of Clinicial and Health Excellence (NICE) is to lose its powers for deciding which drugs should be made available on the NHS (to be replaced by a new system based around GP commissioning) brought an alternative version of Adam Smith’s remarks about shopkeepers to mind:
- NICE is a much maligned organisation, but surely we are not intending to lose the skills and expertise that NICE has built up in terms of drug appraisal (plus an international reputation for excellence to boot) for nothing are we?
- If we really are to move to some form of local prescribing then what safeguards will we see in place to stop the same shadow of inequity moving acorss the country much like the Ice Queen managed in Narnia.
- Many of our members seemed to adopt the only sensible response which was one of cautious scepticism but with overriding concern for what it would mean for patients.
A quick post to say that we have today posted our comments on the NHS White Paper on our website. Our response is the first-listed on the consultations page for 2010 here. If you want to get some idea of the Department of Health perspective on the issues we raise you might like to read my blogs from this week’s Conservative Party Conference – particularly those relating to appearances and speeches by the Minister, Earl Howe.