Academy of Medical Sciences

It’s all over the media today……

Only about one third of the British public say they trust the evidence derived from medical research.

Confronted with media hype, claim versus counter-claim, a paucity of good quality accessible information and time-short GPs, and with few reliable tools to help them, patients are struggling to make sense of scientific evidence.

Indeed, is it any wonder that two-thirds of people told an Academy of Medical Sciences inquiry that they would rather trust the experience of family and friends?

This is just one of the findings pointed to in a new report by the Academy of Medical Sciences – ‘Enhancing the use of scientific evidence to judge the potential benefits and harms of medicines’ – which sets out to forestall a crisis of public confidence in medicine.

The salutary lesson of the Academy’s work over the last two years (prompted by debates about statins, Tamiflu and the HPV vaccine et al)  is that medical research is great at producing new knowledge…..

…..It’s just generally hopeless at putting it in the hands of patients and families in the right way, the right place and at the right time so that they can make the right decision with their doctor.  More accurately, it’s poor at putting tools into people’s hands to make sense of the evidence and reach such decisions.

It is a problem for which responsibility must be shared across the health research system – research funders, charities, universities, journals – if not health and social care more widely. Not to mention the media who report on new scientific evidence as it is produced.

In its characteristically understated but authoritative way the Academy points to a range of measure for overhauling current practice if the public are not to switch off entirely.

From making NHS Choices a central repository of information on the benefits and harms of medicines, to regulators improving the accessibility and readability of patient information leaflets (this one has caught the eye of the media in particular), and the introduction of a traffic light system for grading press releases announcing research findings. Working with patients and the public the Academy has also produced a set of questions to ask as part of conversations they have with their doctor about medicines. is this medicine right for me

However, strengthening and improving the way society uses scientific evidence to make judgements about medicines, will also require fundamental changes ‘at source’ – in the way that scientific evidence is developed so that patient needs are considered in the design, analysis and evaluation of clinical studies and other experiments.

The report leads off with a recommendation that all research funders and researchers take steps to involve patients, carers and the public in research design, delivery and dissemination; to shift their perceptions of the role of the patient from that of a subject to that of a partner with an equal share in the process for producing evidence which has purpose and utility beyond an academic journal.

The good news behind this recommendation is that the UK is ahead of many other countries in involving patients and the public in decisions about research. From the recent appointment of the new heads of the Dementia Research Institute and UK Informatics Institute, to the work that NIHR and medical research charities such as Parkinson’s UK, Cancer Research UK and Arthritis Research UK have done to involve people in deciding what research to fund and how to do it.

One example of such work in the UK which is internationally influential is the adoption by many charities and patient groups of the James Lind Alliance (JLA) priority setting partnerships methodology to identify the top 10 research priorities in a particular condition or field as defined by patients, carers and health professionals. Around 100 such partnerships have been completed or are underway.

But we have some distance to go before these priorities are driving research funders and researchers in the way they should, and until outcomes that matter to patients are measured alongside those that are of interest to science. And recent campaigns such as AllTrials which is all about putting evidence into people’s hands suggest that there is still a good deal of kicking and struggling to happen on the part of the medical research community before it happens.

The Academy’s report may be a bitter pill to swallow for the medical research community. But the fact is that changing public attitudes will require collective action, with a good dose of public insight at its heart.

 

 

I hope those MPs who have yet to decide how to vote in tomorrow’s parliamentary debate on the statutory instrument on mitochnodrial donation – ‘three-person babies’ – will take a few minutes to listen to Sharon Bernardi in this BBC News report from the weekend.  Sharon has lost seven children to mitochonria disease and her appeal for this legislation to be passed is measured and dignified.

In contrast, the Church of England and Catholic Church has made a less than dignified late showing in the debate calling on MPs to block the measure because of the lack of evidence and the need for greater debate about the ehthical considerations.

Quite where the churches have been for the last three years is beyond me.

The Human Fertilisation and Emryo Authority has conducted a comprehensive scientific inquiry including reports in 2012, 2013, and 2014 and a public consultation in 2012.   The Academy of Medical Sciences responded in 2013.  And you can read the report from the meeting of the All-Party Parliamentary Group on Medical Research about this issue which took place just a few weeks ago and included medical research charities.  For more, you may wish to read this Guardian interview with two of the leading scientists pioneering this work, Professors Douglas Turnbull and Alison MurdochOr the Wellcome Trust blog.

Contrary to what the churches would have you wish to believe, this is an issues where the ethics and science have been explored to an arguably unparalleled breadth and depth.  Naturally, they have every right to participate in the this debate but to do so, so late and in such an ill-informed way renders their intervention almost redundant in my view. It certainly does not do justice to their respective congregations.

 

 

 

 

Today the All-Party Parliamentary Group for Medical Research holds its summer reception in parliament. This annual event has become an important fixture on the health research calendar. The ‘great and the good’ assemble to focus on a key issue of the day and to network. At some point in proceedings they will be addressed by the Science Minister, David Willetts MP, or Health Minister, Earl Howe, or both.

This year’s event is headlined ‘healthy futures’ and aims to bring to light how investment in research has long-term economic and social benefits. This is all with an eye on the forthcoming General Election next May and a subsequent Comprehensive Spending Review (CSR).

In recent years, research funders have sought to understand better the impacts arising from the money they spend on research. Often this impact has been expressed qualitatively. But is has proved more difficult to place a financial value on impact. The first report to do so was published in 2008 when I was the Chief Executive of the Association of Medical Research Charities (AMRC).

The report looked at the economic returns arising from government and charity funding of cardiovascular research, also testing the methodology to a more limited extent on mental health research. The study, undertaken by the Health Economics Research Group at Brunel University, RAND Europe, and the Office of Health Economics, found that for every £1 invested by the government and charities in cardiovascular research, a total annual return of 39p was generated each year in perpetuity. The figure for mental health research was 37p per £.

Now the study – commissioned by Cancer Research UK, Wellcome Trust, the Academy of Medical Sciences and the Department of Health – has been repeated in cancer and published as a paper in BMC Medicine to coincide with the All-Party Parliamentary Group on Medical Research reception. You can read the paper here:
http://www.biomedcentral.com/1741-7015/12/99

The key findings in the study which are also published in report form as ‘Medical research: what it’s worth,’ are as follows:

The British public has funded £15b of cancer research over the 40 years to 2009 through taxes and charitable donations.

The time lag between investment in cancer research and it’s eventual impact to patients is around 15 years. This is similar to the figure obtained in the earlier study, and shows the long term nature of the payback from research funding.

Key cancer treatments and interventions have delivered the equivalent of £124b og health gains for UK patients in the 20 years up to the end of 2010.

The proportion of these benefits attributable to UK research was 17%.

Taking the spend, and allowing for the time lag and the proportion of benefits attributable to UK research, each £ invested in
cancer-related research by the UK taxpayer and charities generates returns of around 40p in every following year. Of this, 30p is the estimated benefit from research to the wider economy; the direct health benefits amount to 10p per annum for every £ spent. The overall annual rate of return is estimated to be 40%.

I am sure the study will be challenged by some and so it should.,Only through ever-greater scrutiny are we going to improve these
socio-economic models about research. But they seem of enormous value to me in trying to quantify the impact of money spent today, on society tomorrow. And if it makes policy-makers and newly-minted Ministers put their red pen away then all power to its elbow.

An early start today finds me waiting for a flight to Belfast where I am speaking at the 9th Scientific Conference of the Northern Ireland Chest Heart and Stroke (NICHS) charity.

Just time enough to pen a quick blog then. Lucky me. Poor you.

Last night I was looking at my papers for a meeting about stratified medicine being hosted by the Academy of Medical Sciences (AMS) this Friday. It follows their report ‘Realising the potential of stratified medicine’ published a few months ago.

For some reason the image of Laurel and Hardy came to mind. Or rather those scenes where one of them is carrying a ladder on their shoulder. And the other weaves and ducks to avoid the ladder as it is swung about wildly. Until they get knocked out of course.

Why should the Academy conjure such images in my mind?

Well, it’s not the Academy as such I hasten to say. Rather it is that, as a member of the public, when it comes to cutting edge science or, in this case, health research it can feel like we are that person who is ducking and diving. And, as with Laurel and Hardy, the intentions of many promoting the science is good. It’s just it’s all a bit clumsy. Quite often as a lay person it does indeed feel like being in a silent movie. But I am not quite hanging of a clock in Brooklyn yet.

I heard the outgoing Chair of the HFEA, Lisa Jardine, say on the Today programme a few months ago that science communication needs to – and I paraphrase – enter the era of the ‘talkies’ if we are going to future proof science with the sort of public confidence that is able to help us weather bad times and good. She was implying that we need to have conversations well before conversations currently take place. If that makes sense. Who hosts that is a key question for me.

[i should add that Sciencewise is currently funding a public dialogue exercise in stratified medicine]

Also last night I filled out the British Science Association (BSA) survey (now closed – why only open for 2 weeks I ask!?). This is part of their strategic review. They wanted to know what I thought about them and the work they do around what is horribly called ‘Science and Society.’

BSA is like the BOAC of science communications. It flies some highly airworthy Comets and the occasional Concorde. But it lacks a fleet of Boeings or Airbuses to do anything of scale. Hopefully that might be about to change.

Anyway, I don’t know whether BSA is the right host for Lisa Jardine’s conversation. However, I do feel instinctively drawn towards the idea of a consumer body in science or even more specifically health research. A body that would seek out the best deal for you and I, the consumer, of science as it reaches the market place. Why not?

It would certainly correct the market failure of research funders and others in promoting the interests of consumers as thrown into sharp relief by campaigns such as AllTrials. Those you would expect to do this – such as our charities – are too compromised by their own funding interests (as the public often point out in surveys). Others are poorly equipped to provide the sort of independent critical appraisal that would have credence with the public. A ‘Which?’ of science.

In the meantime, you take care now. Don’t walk under any ladders.

First, a brief history of time in the Europe Union (EU).

It goes slowly.

That’s it!

For the last two years or so the European Commission has been consulting on plans to revise the European Clinical Trials Directive.  The Directive has been in force since 2001.  Researchers hate it.  To be fair so do many patient organisations.   The main complaint is that it slows down research into new drugs particularly in swotty Britain where we tend to do everything by the book and then bind it in gold leaf.  That’s probably because of a) our schooling, b) we are brought up as subjects and, c) because of the same tendencies that make us enjoy queuing (select  from the above as you see fit).

Over the summer the Commission published a draft proposal for new legislation or ‘Regulation’  for consultation and it is being considered by the European Parliament.  Cue the usual confetti of responses from organisations and alliances of organisations stating what they do and don’t like.  My basic summation of these responses thus far is that they think it’s much better because they won’t need any more gold leaf.

Last Thursday, the European Public Health Alliance (EPHA) – an association of non-governmental organisations from across Europe – issued its own revised policy position.  It is to be applauded for being the only one I have seen this far which pushes the Commission hard to consider certain aspects of growing importance to patients in trials:  the right to clear information; openness and transparency, and public involvement in all aspects of clinical trials.  The following para taken from their website gives you a taster:

‘From this perspective it is also vital that clinical trials reflect the populations that are meant to benefit from them – for example women, older people and ethnic minorities – and that access to clinical trial data and reports is as open and transparent as possible, which implies full public disclosure in a central database to protect public health interests. Moreover, patients’ involvement in the process is essential; while this is foreseen in the present proposal, the extent to which patients will be able to influence the process still requires clarification.’

By contrast, this statement issued by UK commercial and non-commercial organisations could, and should, have taken a much stronger line on public involvement than it does.  Particularly given many of the signatories, a number of  whom I admire greatly and are highly supportive of the agenda.  But public involvement is only really mentioned in reference to the Regulation’s proposed panel for reviewing trials.  Such documents – jointly written and needing to be agreed by many – are often a difficult compromise.  But this one does leave the impression that research is the dominant force, spinning a golden thread of ‘we know best.’

The UK has often set the international standard for public involvement in health research.  So I hope this is not one of those examples of our country going to sleep on the job only to wake up and find that our European neighbours are way ahead of us.  As I say, time passes slowly in Europe but not when you are asleep.

Today I started to think about the forthcoming INVOLVE national conference.  More particularly, what I want to say to this important gathering in less than a month’s time.  This will be my first conference since taking over as Chair in June 2011 and, since then of course, I have also taken on the new National Director role.  It is important to me that we emerge from the event not simply ready for the future but willing to think differently and boldly about our future as a movement.

At some point, if only to help poor political studies students doing dissertations, I will write a ‘day-in-the-life-piece’  about what it is like to be a ‘tsar’ as conference hosts are wont to call me nowadays.  It is not a term I favour.  But it’s completely excusable; relaying my full job title needs a deep breath by the person saying it as much as it does for the holder.

I think that what I have valued most thus far in wearing both ‘hats’ has been the opportunity to roam far and wide, to listen to many people and their views.  I hope they continue to share as generously in the future for we can only achieve the things we want to by working collectively.  For it’s down to work time now.

Top of mind today for me has been the fact that I have met many inspiring leaders in public involvement during my rounds.  But that, as a community, we lack the sort of cohesive leadership and ways of working if not organisation that encourage freedom of thought and license to act.  We must come together more.  We must be quicker and smarter at making connections and building networks (partnerships if you prefer) from which we can all gain support and, most important of all, energy.  We must respect eachother’s specialisms and look to help strengthen these in ways that are mutually beneficial rather than be tempted to replicate or re-invent.  And we must together lay some real ghosts that stand in the way of progress such as defining our  impact, the way we should measure our success and, dare I say it, our own behaviours at times.

‘Anon’ as the Bard would say.

Richard Smith (former editor of the BMJ) has written two phenomenally good blogs this week about stratified medicines.  I mention it because  he and I went to the same event at the Academy of Medical Sciences last week.  I should also add that he was there all the time while I could only pop over for a few hours.  But I am glad he self-confessedly found the subject matter and its ramifications as mind-boggling as I did (not that you would know it from his blogs).  The very term ‘stratified’ does not lend itself to public understanding that’s for sure.  Nor are the alternatives that great. I myself came away pondering whether ‘iMedicine’ might be a good alternative given we are so used to the concept of ‘i’ meaning your own personalised service of whatever description.  But there seems to be a health ‘app’ with this name.  So, back to the drawing board for me.  In the meantime the science marches on.  And this document from the Technology Strategy Board gives a sense of the overall UK approach.

Suffice to say that public engagement activity around ‘stratified medicines’ is in its infancy.  I found a few papers which look at small samples of people and are perhaps indicative of wider concerns about discrimintion or privacy or, indeed, of favourable views about the benefits and the importance of good information and support to patients.  But we just don’t know what people think.  However, all is not lost.  The latest issue of the ‘Sciencewise’ newsletter has an articile about stratified medicines (including a good definition) with the news that they are about to put out a tender for a proper public engagement exercise.  Excellent news.  You might also be interested in this piece from last month about a new EU lobby group on the issues.

Finally a plug!  Just mentioning this because I might go myself but the NIHR Imperial Biomedical Research Centre in London is holding a showcase for the public on 1st November.  Details here.