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.

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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).

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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….

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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.