Wellcome Trust

The Wellcome Trust have this morning put out the results of a very interesting study about public understanding of antibiotic resistance.

The research by Good Business found that people struggle with what the term ‘antibiotic resistance’ means, and are more comfortable with alternative terms such as “drug-resistant infections” or “antibiotic-resistant germs.”  Also that, because of the way we are communicating about this issue, they do not see it as relevant to them nor a problem they can do something about.  However, once they were given practical examples of what it could mean to them and their families they then became more receptive.

That’s troubling given that antimicrobial resistance featured on the National Risk Register of Civil Emergencies for the first time this year.  This is an issue that the nation can not address with science alone and needs its citizens engaged.

This is not a large study – just over 60 people took part – but it is a telling one perhaps.  By talking over the top of people’s heads, not thinking wisely about the language we use, and above all failing to relate it to their busy, everyday lives we are missing opportunities to enlist them in this important national fight.

The Wellcome Trust have already said they will adopt different terms now when talking about this issue.

But this study underlines that effective communication is also about getting personal.

Two posts in one day!  Ah, those were the days when we got two Post Office deliveries a day….

Just to say the Government has published the full terms of reference for its Innovative Medicines and MedTech Review to be headed up by Sir Hugh Taylor who is currently Chair of Guy’s and St Thomas’s.  Yes, that’s the very same review I said this morning would be out any time soon.  Only it happened yesterday!

The remit is comprehensive and the door is very much open to patients and patient groups to give their views.  The specific para of relevance here is as follows:

‘Consider how to ensure patient trust in the regulation and assessment of medicines and medical technology, and recognise the importance of the patient voice and role of medical research charities as both sponsors and beneficiaries of innovation.’

The review is being supported by the Wellcome Trust – in other words they are doing the legwork – and there is a short blog on their website here.  They haven’t announced the other members of the review panel nor details of how it will work. We will learn more in due course.

I think Hugh Pym at the BBC has written a good piece here on the significance of the review for the future of medical research and speedier access to medicines for patients.

Also this from law firm Pinsent Masons which highlights the review focus on digital technologies.

 

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.

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?

 

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.