Home » Posts tagged 'Wellcome Trust'

Tag Archives: Wellcome Trust

Spend £1 on cancer research and get 40p back every year: what’s not to like?

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.

Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’

There’s a big push on #patientdata at the moment.

Leaflets explaining how patient data will be shared in the future are being stuffed through people’s letter boxes.  This is part of an initiative called ‘care.data.’

Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The ‘ad’ shows the face of a boy with the strapline: ‘Hello, I’m Peter: We haven’t met before but one day you could save my life.’

In marketing speak both initiatives – although more the former than the latter – have been accompanied by ‘noise disturbance.’

This includes some very valid criticisms of the leaflet and the way it has been delivered.  The inevitable spoiler campaign.  Not to mention the usual misinformation being reported and repeated without challenge.  Some of the news articles I have read leave you with the impression that sharing data is an entirely new activity across health and social care.  It is not.  What is changing is the way this is managed; for the better in my opinion.

Yet I am torn.  There is that part of me cheering the fact that our health service is making a concerted effort to engage people about data after years and years of dragging its feet.  Thank goodness we have begun to share the data dilemma, and everyone’s role in tackling it.

Then there is the communications professional in me that can tell you – without a shadow of doubt – that direct marketing and national newspaper campaigns are blunt instruments that rarely result in public understanding.  Unless repeated.  Unless part of a bigger and more varied campaign.  Unless pursued over the longer-term.  I read somewhere that the recall rate for national newspaper ads is something like 1 in 5 people and lots of variables drive how high or low that figure is.

I fear I sound churlish but my point is a simple one.

I applaud the campaign.

But we are going to have to work harder at this if we want the noise disturbance to subside into something more harmonious.  And that includes supporting regular conversations with patients and carers in those settings where the importance of sharing their data will feel immediate and personal rather than distant and impersonal.  As well as reminders at key points in their life.

My son just got a birthday card from our local football team – why can’t the NHS contact people when they reach the age of consent to tell them why the NHS is there, what it offers and their responsibility to it?

In the meantime you may find this piece by Dr Geraint ‘Big Data’ Lewis at NHS England helpful.  As well as this excellent graphic from Cancer Research UK about the benefits of sharing data from a research perspective.  I must say, despite CRUK being a monolithic organisation, I am feeling more positive by the day about how it is thinking about public involvement and engagement.

The moral case for public involvement in research is dead, long live the moral case…..

‘I was so angry when I found out how much money was being spent on Multiple Sclerosis research but how little patients and carers had been asked about how it should be spent,’ said my friend and colleague.  She was talking about the spark that lead to her own personal history of involvement in research.

I mention this because, at the moment, I quite often begin my talks and presentations with ‘why’ we do this thing called public involvement.  You can see the latest version of this presentation which I gave in Canada last week here.  The five ‘whys’ I focus on are in the picture below.

Why public involvement

I often talk about how these ‘whys’ are in the ascendant for many organisations now – over and above the moral case which perhaps dominated before.  But my friend’s comment is a timely reminder that morality is alive and well in this debate. Thank goodness.

In fact, for most of us, isn’t it the hand that pushes us away from the shore to begin our public involvement voyage?

 

Leadership, and a strategy transplant from NHSBT would do the patient data debate no harm

Today NHS Blood and Transplant (NHSBT) has called for a radical change in public attitudes and behaviours towards organ donation.

The public have been asked to respond to NHSBT’s new strategy.  This asks people to consider some tough questions such as whether registered organ donors should go to the front of the queue for organ donation ahead of non-registered patients?   Here’s a piece about it from The Independent. Last week the Welsh Assembly also voted in favour of introducing an opt-out system for organ donation from 2015.

All credit to NHSBT for the boldness of its strategy. Also for the very direct way in which it is explaining what the challenge of on-going shortfalls in organ donation means in terms of lives lost.  It should also be applauded for its plain speaking approach to setting out the hard choices to be made if donation rates are to go up.

In the last few years NHSBT and its partners seem to have made considerable headway towards breaking through the glass ceiling of public attitudes on this.  It did not always seem that this was a possibility.  It only feels a few short years ago that the winning of public support felt like an insurmountable mountain to climb.

I wish the same could be said for how far we have come in the patient data over the last five years.  Or at least that was my reaction when I listened to this morning’s news reports about NHSBT’s strategy.

On Tuesday I attended a Wellcome Trust workshop to consider some new research they have commissioned on public attitudes to how personal data is shared and used.  It’s an interesting study.  It doesn’t seem to be public yet otherwise I would say more about the findings.  But it was conducted as part of their excellent ‘Spotlight Policy’ series.  Importantly, it looks beyond the health arena at attitudes to use of data in other areas.  Much as I found the research interesting, the ensuing debate could have been a carbon copy of discussions – many discussions(!) I have attended over the years on this issue.  It certainly depressed me in highlighting the lack of forward momentum in terms of policy and practice. And that’s in spite of things like the NHS Constitution, Caldicott2 etc.

It is not that there is no progress.  It is simply that progress has been exceedingly slow.  Nonetheless, even glacial change can feel like revolution, so tired and weary does one feel after a while. It caused one of my colleagues at the meeting to say to me that they just wished someone would make a decision, ask direct questions and take a run at them with the public. Like NHSBT.

I have been cogitating on the reasons why we do indeed move forward at a snail’s pace.

Is it that we have too many voices competing for leadership in the debate but no one having overall leadership and responsibility?  (It does help the public to know who to shake their fist at after all).

Is the debate in the wrong hands, framed primarily by those who have a self-interest in a certain outcome?

Is it that we lack a strong and independent consumer voice (not our charities I should add) that represents the majority but reflects concern for the minority – a National Consumers Council (NCC) for data (see below)?

Is it that there is no real attempt at engagement with the wider public and political agenda on data use in the way that NHSBT has? [the latter is self-evidently true in my view].

Is it that organisations are weighing up their decisions and actions based on false assumptions and, in essence, fighting ghost?

Is it that…?

…..I am afraid I do not have a hard and fast answer other than ‘all the above’ come into play.

If there is any reason to be optimistic about the future it is because at least the Wellcome Trust work began to ask a range of questions which gets us nearer to understanding the values and principles which people are using to make decisions on how their personal data is used in different contexts.

In my view the debate about patient data in research seems to have been conducted in a sort of suspended animation; in blessed isolation from what is happening more broadly across society and for its citizens.  This has caused some of the statements made by scientists seem highly discordant to people when they compare them to their life experience.  So, saying it is technically not feasible and indeed scientifically problematical for people to restrict access to certain parts of their data feels very ‘black and white’ and indeed unreasonable to individuals unless the reasons, the pros and cons, are made clear.  Even more so when they realise that the debate within research is often about how things need to be done differently.

In this light, maybe we should be forging new alliances and working with people like the nascent Consumer Futures organisation as soon as possible.  Their brief is broader from a consumer standpoint and they have already identified the digital landscape and data as priority issues for their work.

New thinking is needed.  But, above all, maybe we just need a dose of good leadership, and a transplant of strategic thinking from NHSBT.

‘Best left alone’ is not the motto we want for our health regulators

It being half-term you can never have enough travel games on hand.

Current favourites for me are: a) guessing who will be the new Director of the Wellcome Trust and; b) thinking of  a name for the body  created if you merged all the current Research Councils into one.

I did apply for the former post since you are asking.  I am very hopeful that my double-whammy pitch of making 75% of the Wellcome Trust Governors members of the public or patients (all of whom will be paid a very reasonable INVOLVE rate of £150 a day), and of building a ‘Crick’ in every town in the UK so that everybody has a ‘Crick in their neck of the woods,’ will get me the job.  In the meantime Ted Bianco (no relation to Matt as far as I know) will be Acting Director from March.

As for that merged body, the leading name is ‘Best Left Alone,’ on the basis that all future Science Ministers with not a clue, will find this a reassuringly named out-tray in which to put offending papers for ‘those experts to deal with.’  Not only that but, given the organisation will be based in Swindon, to most Ministers that’s as good as putting it at the end of an unmarked exit on the M4.  And, at the very worst they can quite quite truthfully report to parliament that all Government funding for the science councils has gone down a BLACK hole.

*                  *                   *

If I don’t get to see any of these visions come true then I shall turn my attention again to saving the Royal Institution (RI)  as I did just a few weeks ago.  I see the Chair of the RI Board of Trustees, Sir Richard Sykes, wrote a blog in The Guardian on 8th February with this rather curious paragraph in it:

Those present at the meeting agreed to join a Future Direction Committee, tasked by the trustees of the RI to put forward their recommendations for this new vision. Chaired by Robert Winston, this committee is determined to come up with a vision that is shaped in consultation with the wider community, including the RI membership. In my opinion, this is our opportunity to create a national strategy for science communication, advocacy and public engagement if we want Britain to be the best place in the world to do science.

Note the rather telling reference to ‘wider community’ in terms of the RI membership and begrudgingly at that don’t you think?  Sort of counts you and me out then doesn’t it?  This is all very odd given the RI campaign message is, and I paraphrase, ‘save it for the nation.’  Er, would that be the same nation, that falls outside of the wider community?  Fingers crossed they show enough trust in the nation on whose behalf they act to ask us for some ideas on what could be done with Albermarle Street.  No, no, I promise to be constructive in a concreting-over sort of way (that’s a joke, promise).

*                     *                   *                    *

Deep down, you see – and I feel this ties all the above  together – is that I think many people in science would prefer a ‘best left alone’ way of working, it’s a sort of undercurrent behind lots of the things they say or do even when they are imploring people to help them out of monumental cock-ups from the past. This is only human nature I suppose.  But pity the poor underpaid communications teams in these organisations who have to manage such tensions on a daily basis.  Talking of which….

*                       *                  *                     *

There was a ‘best left alone’ essence to the broadside that Lords Willis, Patel and Winston fired at medical regulators in yesterday’s The Sunday Times (behind the pay-wall).   Lord Winston also did an interview on ‘The Today’ programme this morning which you may have heard.  The three highly-respected peers wrote that: medical regulation is slowing down science; there ought to be one regulator rather than the four we currently have and; we are wasting lots of money on multiple CEOs and communications people in these organisations, money which could be better spent on medical research.

What was weird about the letter – aside from the fact that it didn’t have any other backers even from organisations that the Peers are closely allied too – was that it read like a long-forgotten missive that had then been rediscovered and mistakenly posted without review.  The fact is, we are in the midst of significant regulatory reform in health research, the merger argument is not seriously on anyone’s agenda right now (even if, like me,you are sympathetic to it), and the line that burning quangos saves money just isn’t supported by the evidence.  It was all a bit of a surprise to me and others who thought we were beginning to reach a new regulatory settlement that was in everyone’s interests.

Then there was that stuff in the letter about salaries.  The easiest and cheapest shot to take at bureaucracy is always the one about overpaid staff.  It’s also the most difficult one to fend off.  But I can’t let it pass.  For while sometimes the criticism is justified and the question should always be asked about how our taxes are spent.  On the other hand, I could just as well be asking our research funders: can you prove beyond all reasonable doubt that every pound of the money you receive from taxpayers or donors is spent on medical research that meets patients needs and is not being wasted?  I’ve yet to see any funder be able do that I’m afraid.  And until they can, the wastage argument cuts both ways.  So, stones and glass houses and all that.

You know,  every story this last week – from the NHS to our food chain – points to the difficulties of regulating increasingly complex systems against a backdrop of constant change and with inherent challenges in terms of leadership, accountability and equity.

Medical research is no different.  Indeed, we have mountains to climb before we can say, hand-on-heart, that we have the sort of regulatory system for health research that patients and the public will expect in the future.  That’s where our efforts should be spent and we should leave no stone unturned in trying to achieve it, however much it might rile researchers and funders.  One day they might actually count their blessings that we didn’t leave them alone.

Data, data everywhere…new report, plus NIHR’s achievements in 2012

Yes, we are positively swimming in data these days.  And I don’t about you, but I’m looking forward to doing some data-linkage with family and friends over Christmas and the New Year.

From a Government point of view, making best use of the data which is routinely collected by departments, public agencies and others, linking it up and enabling researchers to interrogate it in a way which does not impinge on a citizen’s privacy, has been a big topic of conversation this year. What to do?

Well, the Economic and Social Research Council (ESRC), together with the Medical Research Council (MRC) and Wellcome Trust, established a taskforce in 2011 to look more deeply into the subject and has just produced its report and recommendations.  They propose the setting up of Administrative Data Research Centres (ADRCs) in each of the four nations of the UK, a single governance framework for them, a common approach to data storage plus some ground rules for publicly funded researchers to access the data held.

They recognise the importance of public engagement and say the overall Governance Board must have at least one lay representative and that each Centre should have a public engagement plan and resource to support it.  The report is here.

Meanwhile – and I mention it because I was on the review panel – NIHR has recently announced the successful bids to set up Healthcare Technology Co-operatives (HTCs) which will work collaboratively with industry to develop new medical devices, healthcare technologies and technology-dependent interventions in clinical areas of high morbidity or unmet need.  The areas covered include: chronic gastrointestinal disease, brain injury, cardiovascular disease, Devices for Dignity, wound prevention, colorectal therapies, mental health and trauma management.  Full details on the NIHR website here.

You might also wish to visit the NIHR home page right now where they have also just listed the year’s achievements – an impressive list.

Comment piece: New mental health research charity springs from an unlikely quarter #mentalhealth

It has been in the works for a not inconsiderable amount of time.  A slow burner if you like.  So it somehow seems fitting that the first flames should flicker almost unnoticed.

Yesterday, Research Fortnight’s Adam Smith wrote about a new mental health research charity to be launched next year with a hefty £20 million kick-start from the Wellcome Trust.  It’s working title is ‘Insight: Research for Mental Health.’ But  it’s new CEO, Cynthia Joyce, is quoted as saying it is likely to have a different name by the time it hits our high streets.

This is a typically bold strategic move by our largest research charity.  Who would have thought that the Wellcome Trust would one day decide to pump-prime a new charity whose business model will depend on traditional public fundraising?  I suspect that the Trust will have concluded that this is the best route to making an all-round contribution in the area.  For instance, adopting this model is more likely to help raise awareness and de-stigmatise mental health issues than if they had gone the way of a traditional grants programme.

However it is also a strategically important one in terms of the UK’s international standing in mental health research.  For it begins to correct two long-term issues in the field: the need for a stronger and more diverse funding stream and; the lack of a major charity funder that is prepared to both support research as well as advocate for funds and encourage other funders to work alongside it .

There is no doubt that these systemic issues have held us back.  You only have to look at the figures produced by the Association of Medical Research Charities (AMRC) as part of their latest annual review to see how far mental health lags behind many other conditions in funding from UK research charities despite its human cost and the cost to the nation.

For whatever reason, there has been a collective oversight if not reluctance by mental health charities to pro-actively grasp the research agenda notwithstanding a few valiant efforts to change this.  The work of Mental Health Research UK and the Mental Health Foundation are of particular note in this regard.  Overall though, it has been difficult to turn a general acceptance of the need to do more into some sort of positive action, as I found when I was at AMRC.

What has happened in the past no longer deserves our attention.  It is what happens next that matters.

Above all, those who are doing the work – such as our excellent Mental Health Research Network (MHRN) – will be looking to all funders to think and act collaboratively.  Existing charities with their immense knowledge and experience of mental health issues and the needs of their community must act as good hosts.  But the new kid on the block must also act the part of the good guest who brings something different to the part but also has much to learn.   That includes the urgent need to research quality if life issues as much as take forward biomedical research. At least Cynthia Joyce would seem to be making the right sort of noises in yesterday’s piece.

We shall see.

GSK’s Witty remarks are easy to swallow from a patient perspective but the rest of the flock must follow

I spoke at the Clinical Discovery 2012 conference yesterday about the future value and impact of clinical research.  This is one of a number of similar events I’ve presented at over the last month or so.  On reflection there generally seems a more ‘upbeat’ conversation among conference-goers about clinical research in the UK compared to this time last year.  In fact I’ve heard a number of people speak from the floor about how we are rising up the international league tables again in terms of delivering clinical trials.  It will be interesting to see any emerging data to support these case reports.

One of the slides I put up yesterday showed this reported quote from Sir Andrew Witty’s speech (CEO, GlaxoSmithKline (GSK)) at the Wellcome Trust from last week.

“There isn’t a day goes by that me and the rest of the company aren’t grateful for what patients offer to do in a clinical trial. They offer willingly to go through a process of experimentation. That’s an extraordinary gift from individual men and women. At one very human level actually we should be finding ways to make that commitment as useful as it can possibly be for society.“

This is the speech in which Witty made his announcement that GSK would be opening up its clinical trial data and pulling together an independent board composed of, among others, patients, to consider requests from researchers who wish to access it.  An undoubtedly welcome move.  But, as the old saying goes, ‘one swallow doesn’t make a summer.’  Patients – or at least the ones I talk too – are increasingly concerned about this stuff and the rest of industry needs to be encouraged to follow suit.  As more patients become involved in research they will rightly have searching questions that can only be properly answered with greater transparency.

Anyway, I suppose the point I was trying to make in my slide was that, in any discussion about the value and impact of clinical research, it is imperative that we define it from a patient perspective – in terms of patient outcomes, improvements in quality of care but also their experience of taking part in research.  Not just the wealth of the nation. And – as Sir Andrew says in his quote – that also means, at a very human level, acknowledging the value of people’s contribution.

I went on to say that one of the perennial complaints of people who have taken part in research – and a symbolic one in terms of their status within the system – is not being thanked for taking part in research and, more importantly, receiving no feedback whatsoever about what the research found and what question it helped to answer.  I guess someone will tell me – as others have on a number of occasions – that we can’t do this because of commercial confidentiality etc etc.  But I suspect they will crumble in the same way that many of the arguments against greater openness and transparency in industry trial data are crumbling.  Sooner rather than later I hope.

 

 

 

Spirit of ad-venture shown by charities in funding drug research or a sign of desperate times?

From The Economist in New York, a short but interesting piece on the growing collaboration between charities, pharmaceutical and biotech companies in the US to bring new drugs to market.  More specifically it looks at the ‘venture philanthropy’ model being adopted by charities there to support clinical trials.  I’m not quite sure I’d characterise it as the ‘desparate’ lunge that the journal suggests, more an evolution in behaviour engendered by many factors; austerity and costs are just two.  It is also a quite deliberate and strategic move to foster innovation on their part.

We are seeing the same pattern emerge here in the UK.  In just the past month we have seen our two largest medical research charities both announce ‘venture philanthropy-like’ initiatives – Cancer Research UK and the Wellcome Trust - to boost drug development and fill the ‘translational gap’ as it is often termed.  ['Scope' have also announced something similar in the disability area.]

This is on top of what UK medical research charities are already doing to support clinical trials. If you want to understand more about venture philanthropy you might want to look at PhilanthropyUK’s website and this article in particular which talks about some of the areas in which venture philanthropy activity is growing – medical research being one of them.

The brute reality though is that I think this is a strategy really only viable for the larger charities who have the funds to invest.  But I would be interested to know whether the criteria they are adopting for investment decisions encompass the possibility of putting money into ideas being generated by other charities who do not have the scale to take them further?  I don’t see why not.  That could be a potentially important stimulant to greater collaboration between charities.  Or perhaps I have just got the wrong end of the stick, although surely it’s about investing in, rather than the provenance of, the idea.

Meanwhile PatientView has published the latest in its surveys of global patient group opinion about industry – this time it’s the turn of medical devices companies to come under the spotlight. In reputational terms, this sector within industry comes ahead of pharmaceuticals and biotechs in how well they are rated generally, but share the same dismal record in terms of ethical marketing.

This ahead of the annual conference of the Association of the British Pharmaceutical Industry (ABPI) in London later this week entitled ‘Can we afford innovation in medicine?’

The public interest argument must extend beyond open access…here’s a sort of lay summary

Good Guardian blog yesterday giving a lay summary of the ‘open access’ debate vis a vis papers published in scientific journals.  There’s also been a healthy exchange of letters in The Times this week but ironically that’s behind their paywall.  However, at least The Times is available in all good newsagents at a reasonable price.

Unsurprisingly, I totally get and support the arguments in favour of open access.  But inveterate blogger and public engagement in science expert, Alice Bell (blog home page here), twittered this morning that open access is more than just about publishing papers.  Hear, hear!

I believe the arguments being made by research funders and others, that ‘open access’ has societal benefits, are sincerely held.  But, at the same time, the debate does sometimes come across like a power struggle between the mighty and the mighty.

How good, indeed seismic would it be, were funders to use the same public interest arguments to ensure that the people they fund got their act together, not just about where they disseminate their research but how they disseminate it.

Public understanding of science will be marginally improved by better access to articles.  Yet, it could be radically improved if we also saw a commitment to the writing of a good lay summary of their work and to see this appear with every published article. For some reason, funders have seemed reluctant to pay serious attention to this as an important tool to understanding science, its dissemination and impact.  But it’s clearly in the public interest.

See the PatientsParticipate project for more.

Got to dash!

A few more ‘£s’ and I’ll be opening my own Wellcome Collection…just keep those surveys coming

If only petrol was as plentiful a resource as public attitudes.  There is no end to the extent to which we can mine what the public thinks about this, or that.

Occasionally a survey will hit a rich seam of information and insight.  Then again, so numerous are those who are drilling into the public mindset nowadays, that I fear the small nuggets of interest reaching the surface are not without risk.  How long, I wonder, before the mountainous scree of data and information of dubious solidity reaches such a height that it obscures our horizon?

Heh ho! We can but hope that each in turn will move us a little further forward to where we want to get too, and that none do too much harm.  Have they asked the right questions, is it actionable, can we do something with this? These are the questions we should ask of such forays into the public consciousness?  And these two surveys do take us a little bit further forward I think…

Last week PatientView published the results of a survey it has conducted of 400 patient groups on the question of: what do patients value in healthcare?  There are some thought-provoking results embedded within it.  The fact that patients rate relief from symptoms and pain as highly, if not more so, than treatments which increase life expectancy is an affirmation of an issue that has long been articulated in the patient community.  Of all the money spent on researching new treatments and interventions, how much might be better directed at studying and mitigating the consequences of illness which impair a person’s quality of life?  Or simply making those innovations whose worth is already proven work better in the field – as Richard Smith, the former editor of the British Medical Journal (BMJ) suggests in his eloquent blog this week.

This week, I went to a preview of the results of a new report by the Wellcome Trust and the Medical Research Council (MRC) which will be published online shortly, entitled: “Assessing Public Attitudes to Health Related Findings in Research” this week.

It doesn’t quite do what it says on the tin because you could take that title to refer to giving feedback generally to participants in research?  (It doesn’t happen in case you are wondering).  In fact, the report is an examination – through survey and deliberative work with the public as conducted by Opinion Health – of people’s attitudes as to what should happen if researchers and clinicans discover something that has direct significance for the health of someone involved in a study.  I’ll let you read the findings for yourself in due course as they are worth reading as at least the basis for discussion on what should happen in this tricky area.

To be honest I was more absorbed by the mood music of the audience discussion afterwards: the view expressed by more than a few that ‘informed consent‘ for patients is a myth given that doctors are often making an informed guess about diagnosis and treatment; the sense that these dilemmas are not new ones to us but that the real difference is the amount, and  pace, of research and discovery and our capacity and capability to deal with the issues on such a scale and; that there is a need to think in terms of patient rights rather than patient preferences.

The most salient remark, however, was that perhaps we have reached a point where we need to re-think the way we do research; that it should no longer be seen as something that specialists do but should be conceived as the product of an evolutionary partnership between patients and researchers.  Actually, it wasn’t so much the remark that made me prick up my ears as the fact that it came from one of the industry representatives in the room.

There is much to praise about the two studies above.  But if only I could say the same of others.  For I do find myself coming away from reading or hearing other surveys feeling that the underlying premise for them is wrong and what they show, next to useless.

If I had a ‘£’ for every survey that reputedly showed the public doesn’t understand medical research or science I’d be able to open my own version of the Wellcome Collection.   But I wouldn’t know what to put in it because the question is often put so generally that the answer can’t possibly tell me much.  What don’t they understand: it’s value, the difference it can make to lives, why it is an important part of what the NHS does, why they need to take a certain medicine for their condition? Or do you mean how an MRI scan works, or the genetics of Alzhiemer’s?  If so, that’s a bit like saying you don’t understand football because you can’t relate the off-side rule in all its glorious detail.   However, we can’t really debate this further because the question doesn’t allow us.  Shame that.  But don’t worry, it probably props up a lot of misdirected or public engagement work so that’s ok.  Actually, it really is a shame.

Perhaps we need to give the public a bit more credit, beginning with the questions we ask of them.

Charities wade in on Leveson and media reporting of science

The Association of Medical Research Charities (AMRC) together with Cancer Research UK and Wellcome Trust have this afternoon published their response to the Leveson inquiry into the culture, practice and ethics of the press.  See first item listed under 2012 on this page at the AMRC website.

The submission makes good points and I learnt a thing or two about how practices and approaches to science reporting are changing.  Note the reference in it to The Guardian for instance.

Of course, today we have a real-live case study in the media with the news of the Human Fertilisation and Embryo Authority’s (HFEA) public consultation on the acceptability of new techniques to treat mitochondiral disease and the associated Wellcome Trust £4.4 million grant to Newcastle University to build a new centre to lead research in this area.

My sense is that media reporting of this sort of ‘high-politics’ event in science seems to have improved and is continuing to improve.

The more difficult issue is the daily churn of lower-lying misinformation in the media about science or more specifically health research and associated health claims on which people may act.  That seems a somewhat harder nut to crack.  Some of the proposals made by AMRC et al would help.  But there are wider issues around training etc that could also have a positive impact.

Anyway, I am pleased that they’ve done this and brought this to the attention of an inquiry whose recommendations will have a long-lasting impact on the culture and practices of the press.

Flying in the face of an interregnum

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.

Committee gets a Crick in its neck about UKCMRI

So the Commons Science and Technology Select Committee has this morning published its latest report about the building of the UK Centre for Medical Research and Innovation (UKCMRI) in London.  THES has a report here.

The Committee seems rather oddly to have raked over old coals in its questioning of whether London is the most appropriate place and asks that UKCMRI make every effort to work with colleagues across the UK so that opportunities are not lost.  I say ‘oddly’ because I always thought this was in UKCMRI’s job specification anyway. 

It also asks for a reconsideration of the issue of social housing near the site.

I didn’t know this but I understand that the building is going to be named after Francis Crick, co-discoverer of the structure of DNA,

International clinical trials day and a bit of mopping-up

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.

Wellcome Trust Image Awards 2011…and kidney disease survey

I was unable to get to the Wellcome Trust Image Awards last night so as recompense I am posting the link to the online gallery of winning photos.  The picture of the kidney transplant by David Bishop from UCL Medical School is my favourite and got a special award. 

This also gives me an opportunity to mention Kidney Research UK’s 50th Anniversary and their online survey to better understand public awareness and perceptions of kidney disease.  Please do take a few minutes to do the survey.

Getting touchy over the information revolution

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.

UKCMRI Gets Go-ahead…and news on CST

Those who visit this blog regularly will know that we’ve been following progress with the plans to build the UK Centre for Medical Research and Innovation in London ever since our first post.  So, in what feels like an early Christmas present for science, it is good to be able to report that yesterday Camden Town Hall councillors gave their go-ahead to the project. 

 The Wellcome Trust has a straightforward press notice on it (they are one of four partners involved, the others being Cancer Research UK, UCL and the Medical Research Council) but I can highly recommend the UKCMRI website as well where you can get a better idea of what the centre will look like and what it will do.  Let’s hope the new centre will be snowproof unlike the rest of London.

In other news this week..this hasn’t been picked-up very widely but the Prime Minister’s Office announced the membership of the re-constituted Council for Science and Technology which was set-up in the early nineties (and re-launched in 2007) to advise the PM on cross-cutting issues of strategic importance.  The Council is also advertising for ten independent members.

Thw word is that Monday looks like the day when the Government will announce the science budget allocations…and I also hope that we can publish our independent report of the AMRC/INVOLVE patient workshop on research regulation.

Times Letter on Charity Research Support Fund (CRSF)

A brief but important mention of the letter in today’s Times signed by over 100 cancer scientists and doctors.  The letter cites Breast Cancer Campaign (an AMRC member) and highlights the importance of the Government-backed Charity Research Support Fund (CRSF) to the funding of research in universities by medical research charities. 

If you want a succinct but well-articulated case for CRSF then you need look no further than this letter.  And it’s significant in my opinion that the argument is being made directly by scientists themselves rather than charities.  This is not special pleading.  The fact is that the Fund is an important foundation for the partnership between Government, universities and charities in the name of research, and a vital mechanism for helping to leverage research funds from our sector.

You may also wish to look at the joint statement on CRSF that AMRC produced with BHF, Breast Cancer Campaign, Cancer Research UK, the Wellcome Trust, Universities UK and the Russell Group in July this year.  The statement was submitted with our spending review submission.

All our discussions with Government thus far suggest the arguments for the Fund have been accepted just as those on ‘science = economic growth’ were taken on board by HM Treasury with its spending review announcement.  But how this translates into actual money won’t be known for possibly a few weeks yet. So letters like today’s can play a useful role in keeping the issues to the fore.

%d bloggers like this: