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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.

A brief update on NIHR’s review of public involvement in research

We have just passed the mid-way point in the ‘evidence-gathering’ phase of NIHR’s strategic review of public involvement entitled ‘Breaking Boundaries.’  So here’s an unofficial Chair’s view.

The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR’s website here

People can at the moment choose to respond to the review using the downloadable questionnaire on the website, or using the online survey which is available here.  So far, almost 200 people have responded to the online survey.  61% have said they are a service user/patient/consumer/carer.

In addition there is now a facilitator guide as well as some PPT slides available for people who are planning to hold a group discussion with patients, carers and colleagues before responding.  Our sense is that quite a few organisations are planning to do this as part of their response.  Anyway, the guide and the slides can be found at the end of this post.

Also over the last month we have held discussion sessions at four meetings where the excellent RAPPORT study of public involvement was reported. These events took place in Manchester, Bristol, London and Cambridge and reached about 200 people, again mostly patients, carers and members of the public.  Thinking about these sessions and the sorts of comments we are getting through the written and online survey evidence, some key issues and questions.  Thematically, these might be headlines:

  • The purpose and value of public involvement
  • The infrastructure needed, national, regionally and locally, to deliver public involvement
  • The resources necessary to deliver public involvement that works
  • The importance of relationships to the success of public involvement
  • The learning (knowledge, skills, experience) needs of all partners and how to support them
  • The need to tackle the impact and outcomes agenda

We have also held two ‘international’ sessions by phone with colleagues from Canada, USA, Denmark, Australia and the European Union.  It was clear from these conversations that the UK is held in very high regard for what it has achieved in public involvement; we are the recognised leader in many respects. Also, that this leadership is closely associated with the work of INVOLVE over the years.  Nonetheless, we have much to learn from them.  We are all battling with the need to prioritise and find models suited to the future not the past or present.  The case for an international alliance or association where we can share our ideas and challenges is growing in strength.

This week we will be meeting with representatives and members of the Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI) to get their views on public involvement in research.  Heading into June there will be a range of events where we will be holding ‘consultation’ sessions including North West People in Research Forum on 30 June and the Health Services Research Network (HSRN) conference on 19/20 June.  And, finally, some yet-to-be scheduled tweet chats and social media activity.  Please remember that the hashtag is #PPIBreakingboundaries

Please keep the responses coming in.  I know I speak on behalf of all the review panel when I say they are insightful, helpful and hugely important in their own right.

The  previously mentioned guide can be found here: 

  And the slides can be found here:

The medical marathon; a piece to mark the #LondonMarathon2014

What is, I wonder, the equivalent of Noel Coward’s lyric ‘only mad dogs and Englishmen go out in the midday sun,’ which might encapsulate the phenomenon that is the Virgin Money London Marathon?

This morning tens of thousands of runners will set out from Greenwich Park as they do every year with high hopes of finishing two, three, four or more hours later at Buckingham Palace.  It will be the 34th London Marathon.

People from all ‘runs of life’ including patients, carers, doctors, nurses researchers, scientists and charity fun-runners will have trained long and hard these past few months so that they can take to the Capital’s streets and know that, with every pounding foot, money is being raised for their favourite cause. And medical research dominates those causes.

It is difficult to say precisely how much of the £660 Million raised for charity since the London Marathon started in 1984 has gone to medical research.  But my reckoning is that, out of 54 charities who have been honoured to be the official London charity of the year since then, 20 have been medical research charities.  The British Heart Foundation leads the pack having been chosen four times, the Anthony Nolan Trust is not far behind.  Including this year, it has been the official London Marathon charity on three occasions.  There’s a page dedicated to the history of the London Marathon and its links to charities which is worth a look if you are interested.

The first of these medical research charities was the Middlesex Hospital Research Fund in 1986, the hospital being notable for being a significant cancer research centre then and now I believe. Also, for being where I was born!

There are many, many more charities who simply enter runners into the event of course.  I calculated that, of the 91 who I assume pay for the honour of being included on the main listing provided by Virgin Money, 38 are known for their work in supporting medical research.  Yet this only skims the surface.  Trawl further through the A-Z listing and many household names pop up who also do much to fund medical research.  And who knows how many local research charities barely merit a mention beyond their local newspaper if that.

And what of the runners themselves?  I have a feint recollection of turning up at Trafalgar Square in 1993 or 1994, and being marshalled by the wonderful Paula Dawes – the Alzheimer’s Society’s then head of fundraising who did more for staff and volunteer motivation with her gigantic fundraising thermometer on the wall than any excel spread-sheet produced for a committee – to cheer on just over 20 runners on a dreary Sunday morning.  Last year, the number of people running for the Alzheimer’s Society was nearer 400 I believe.  That seems a pretty incredible rise in the numbers.

The links to medical research do not end there.  For 31 out of the last 34 years, there has been a London Marathon Medicine Conference which looks at the medicine and science of marathon running.  It is also proving to be a teaching and research opportunity for sports scientist students.  However, I would be interested in knowing whether anyone has published a scientific paper about, or run a clinical trial involving, London Marathon runners?  Forgive me for not knowing that, if there has been.  Perhaps the only thing we lack is a few more significant medical research landmarks along the route; The Crick in 2016?  It might be one for the public engagement team there to think about.

Philosophically I wonder whether there is something deeper that draws together the modern penchant for running marathons and our commitment to, or support for, medical research?  The metaphor of the marathon certainly serves us well in health conjuring up images of commitment, camaraderie and the joy of reaching the finishing line.

For example, my good friend and colleague, Derek Stewart, has written before about the similarities between his progress as a runner and his journey in public involvement in research.  I also remember from my time at the Alzheimer’s Society an article written by a carer, comparing the years spent tending for their loved-one to that of running a marathon.  It became a very popular piece among fellow carers and supporters.  How many times have we also heard scientists and researchers talk about the long process from scientific discovery to viable treatment of therapy?

For this writer (and I am not a runner) the act of doing a marathon is a symbolic nod of respect, a doffing of the cap or handshake of support, in recognition of what it takes to live with ill-health and to find a remedy.

And we shouldn’t forget that the London Marathon is just one of many such events that take place up and down the country throughout the year – a good few in the park behind my house in South London – where people are going that extra mile for research.  Indeed, considering  the UK is second only to the Netherlands (70% versus 78%) in Europe terms of the number of people saying they have donated money to fundraising campaigns for research – the Europe-wide figure is 39% – that’s one gutsy performance by our marathon runners.

It also reinforces what I think is the key message that emerges from the recent IPSOS Mori/Department for Business Public Attitudes to Science report [by the way this is a superlative piece by Alice Bell in The Guardian about itHe blog is worth checking out too] . Namely, that you may be able to make an argument that the British public’s understanding of science leaves much to be desired.  But you can’t fault their gut instinct in support of it.  And what better symbol of that, than their staying the course over 26.2 miles.

Good luck to them all.  And, if any should be reading this afterwards while nursing aching limbs and sore feet, thank you.

 

 

Fight the good fight: medical research charity advertising slogans

Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends?

Diagnosed with blood cancer, Chloe only has one hope…YOU. Text HOPE…. Anthony Nolan Trust 2013

Elliot is deafblind. He can’t tell it’s Christmas. Text TOY to….Sense

Help us beat cancer sooner – Cancer Research UK cinema advert late 2013

In the fight against cancer every moment counts
Because we’re not just fighting cancer
We’re racing against time
To do more research
To find more cures
To save more lives
One day research will bear cancer
And the sooner you give
the sooner that day will come.
Cancer Research UK Jan 14

We’ve found a cure for blood cancer. Pleased to meet you.
Anthony Nolan Trust

Conquer the London to Brighton Bike Ride
British Heart Foundation (BHF) tube advert jan 14

Cancer doesn’t care if you put this in the bin
(Cancer Research direct mail shot) feb 2nd 14 at home

Because no one should face cancer alone Feb 2014 train poster Macmillan Cancer

These things happen to my mother (‘other people’ crossed out) Breast Cancer CampaignMarch 2014 Warren St tube

I wish I had breast cancer
Newspaper ad – Feb 14 – Pancreatic Cancer Action

Comment: So what next for care.data?

The fundamental issue at stake here is respect for the citizen.

The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper?

Many will say that NHS England – who yesterday announced a six-month pause in the scheme – have taken the biggest hit. But no one emerges with great credit from this affair. For citizens are non the wiser one way or the other. They have been ill-served by policy-makers on both sides of the debate, as they have been on this issue for as long as I can remember.

I should say that I support care.data.

I think that it will be a secure system but that there are always risks. And no guarantees. I buy into the notion that it is important to future medical research. But I think the claims around this are often exaggerated and don’t do their proponents any favours. I think a form of ‘opt-out’ is the most practical option and in keeping with the values that most of us hope underpin the NHS. Yet I also think that we should have the right to change our minds if and when our life circumstances change.

I think the professions have played fast and loose on the issue for too long. After all, a lot of their power within the system is locked into the current status of yours and my medical records and data.
When we developed the ‘Your health records saves lives’ leaflet many moons ago, citizens were more willing to share their data than GPs who tended to take up a highly paternalistic stance. However, more than a few were less and less paternalistic about their patients when it came to the prospect of working with pharmaceutical companies and being rewarded for it.

Anyway, that’s an aside or should I say unwarranted broadside. But I am afraid that care.data and the years of debate about data preceding has often been a case of policy-makers being, at best, neurotic and, at worst, mistrustful of their fellow citizens.

Fact is that I have been able to form an opinion because I have had an opportunity to listen to, and interrogate, the arguments at close quarters. And that is what was so wrong about the care.data leaflet campaign. In tone and style and delivery it was dismissive of the citizen and their right to question and form an opinion. Would it have been different if NHS Citizen had been in place I ask? Could it not be the perfect issue on which to test and perfect this initiative? Or is that too much to expect?

As an example of how ‘national’ and ‘local’ can work together in the new NHS to roll-out national initiatives, care.data has been a disaster. Whatever happens over the next six months, the initiative must be co-produced with citizens at source, and its delivery collaborative effort by NHS England working with Healthwatch, patient groups, GP Participation Groups and many other partners. If care.data means that much to our nation in terms of health and wealth, we should spend the time and money in investing in our citizens to understand why.

And, lastly, if researchers and doctors and managers want a lifetime of yours and my data to work on then they need to do more to develop a relationship with citizens about its importance and how we can be better custodians of it. A few weeks ago a head of an NIHR Biomedical Research Centre was telling me how their NHS Trust is now including short statements in letters to patients to help grow understanding about how data is used. It is a small example of the level of visibility we need for this important aspect of delivering care in the future.

Fact is, if we want a 21st Century NHS, we need a 21st Century attitude to involving citizens in decision-making.

My view on that pancreatic cancer ad campaign

The charity Pancreatic Cancer Action have caused a storm with their new ‘cancer envy’ advertising campaign in which patients are pictured saying things like: ‘I wish I had breast cancer.’

So if it’s shock tactics they were after, and public attention to go with it, then they must be delighted.  As must the advertising company most of all. Job done, they will be saying I suspect.

One can understand the temptation for charities to go just that little bit further in making us sit up and notice.  More charities than ever before are competing for yours and my funds. They are, I believe, genuinely motivated by a desire to make sure potentially life-saving messages get through to us.  But do the ends really justify the means?

I can remember two occasions in my charity career when judgement calls needed to be made about advertising.  At the Alzheimer’s Society in the mid-nineties the staff recoiled at a proposed advertising campaign showing a brain scan with the slogan ‘It blows your mind.’ But when tested with people with dementia and their carers they loved it. They felt that the time was right to shock people a bit. So we ran it. All seems a bit tame now twenty years later.  I can’t even find the posters on the internet.

More recently when I was at Ovarian Cancer Action I looked at some proposals for a ‘shock’ advertising campaign and would have probably signed on the dotted line if I had had a choice.  But I was persuaded otherwise by colleagues.  Looking back, they were right and I was wrong.  There was little evidence to suggest there was the appetite among patients and carers for such a message at that time.

The reason for telling these stories is simply to make the point that – as with much else in running a charity – things get dangerous once you get too far ahead, or too far behind, your beneficiaries and how they think and feel.  To be fair to Pancreatic Cancer Action it does sound as if people with pancreatic cancer have been involved in the campaign.  They feature in it at least anyway. The founder Ali Stunt makes this point in her blog about the campaign yesterday. Although the fact that -as far as I know – other pancreatic cancer charities are not clamouring to endorse it might suggest that they are hearing otherwise on the ground.

On This Morning earlier today, the resident TV doctor, Dr Dawn, said the controversy about the campaign was based on a misunderstanding of its message.  The charity is wanting people to go to their doctor with possible early symptoms to get them checked out as possible.  Fair enough.  But if the message is being obscured by the medium’s ‘shock tactics’ then I would say the campaign is failing in its objectives.  I could understand it a bit more in a strange way if it was a cool fundraising pitch but not as a health improvement campaign.

I do agree with others that the charity has crossed the line into quite dangerous territory in which we are being asked to consider whether one disease is nastier than another. Is that really what charities want now? As Breakthrough Breast Cancer have said today: ‘It’s not a competition.’

It’s a matter of judgement at the end of the day.  And I am no Mary Whitehouse.  But in my opinion the charity has made the wrong call.

I just hope it’s not counterproductive in the long run.

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?

 

Political spotlight on Health Research Authority (HRA) intensifies

I am sure the new Health Research Authority (HRA) can take care of itself.  But the expectations being heaped on it by others show no signs of abating. I wouldn’t be surprised if tomorrow someone calls on it to cure cancer. If it had been created by a Blair Government it would surely have been dubbed ‘The People’s Health Research Authority.’ Come to think of it…..

Why do I say this?  Well, the committee of MPs and Peers looking at the draft Care and Support Bill establishing the HRA has just published its report; the Association of Medical Research Charities (AMRC) has provided an excellent overview of their conclusions here .

The key message from the committee is that the HRA should be ‘promoting’ research.  I am sure this is right. But the very real problem for the HRA is how do you define this in practice?  For the answer is potentially as long as a piece of string.  There is certainly a real danger for mission drift if it’s not careful. There is also some irony in the fact that it was onlya few short weeks ago that three eminent Peers wrote to The Times criticising the HRA and other regulators for the amount of money spent on media and communications. Damned if you do, damned if you don’t (see my blog on this from just a few weeks ago).

Did anyone else also raise an eyebrow at the conclusion parliamentarians drew that there is ‘no single body promoting health and social care research?’ Er, the National Institute for Health Research (NIHR) perhaps? For one.  It feels that the Committee has assumed the body language of funders and researchers when it comes to this thing called ‘promotion:’  quite simply they are good at promoting their own science but when it comes to promoting science in general it is rapidly becomes someone else’s responsibility. And often the responsibility of organisations that are already running on vapour in terms of resources.

Yet it is evident from the conversations I have had with colleagues thus far that generally they have been encouraged by the quietly efficient and logical way that the HRA is going about its business.  It’s approach to public involvement seems sensible given the lack of precedence for where it wants to head.  Its stakeholder event a few weeks ago was, by all accounts, excellent.  It is steaming ahead with its pilot of speeding up approvals.  These are all good things and it is important that we support their endeavour in the coming weeks and months if it is to become the fair but robust regulator we all wish to see.

Across the Committee corridor the House of Commons Science and Technology Select Committee has just  published all the written submissions it has received as part of its inquiry into clinical trials.  Some of these submissions are filtering into the press.  And this evening I noticed this piece from Outsourcing Pharma.Com about the evidence of the Clinical Contract Research Association (CCRA).  It again puts the onus on the HRA pulling things together. (By the way, I was just as interested in CCRA’s call  to simplify consent and other complex processes which stand in the way of patients taking part  in trials).

As it takes oral evidence, Committee  members will focus in even greater forensic detail on the role of the HRA in promoting transparency in the registering and reporting of clinical trials.  The Care and Support Bill Committee took a strong line on this and says HRA must lead the way.  I would agree 100% with them.  But HRA can only do this if it has strong political backing from the beginning and when it is having to face down the recalcitrant funder or researcher who won’t play ball.  All on the basis that it is just ‘red tape’ preventing them from doing their life-saving work.  For it is at those moments that the wind is often taken out of the regulator’s sails by a lack of courage of the part of our politicians.

So how the Committee chooses to deal with this particular issue is going to have an important bearing on the future workload of the HRA and how it is monitored in parliament.  In the meantime, the Care and Support Bill will establish its formal role.

Yep. There’s no doubt about it. All eyes are on the HRA and this is just the beginning….

The lay summary is dead, long live the lay summary (#A2UComp)

‘They can’t write for toffee.’ ‘They’ being scientists of course. But like most generalisations, this statement is utter tosh.

You only had to be at the ‘Access to Understanding’ awards (#A2UComp) at the British Library on Monday night to realise that. The lay summaries that I and my fellow judges had been asked to review were of a very high standard. The winner, Emma Pewsey, is to be commended for beating off such strong competition. Sharmila Nebhrajani (CEO at AMRC) has written an excellent AMRC blog today on the whole competition if you are interested in learning more.

I very much doubt that scientists are much worse than any other ‘professions’ when it comes to their writing skills. And, in terms of resonating with the intended audience, success is as much predicated by the mindset of their author as their ability with the pen.

When I was a Head of Communications there seemed no end of graduates rolling up for jobs who would be able to tell you who fronted what TV programme . But they couldn’t write a news release to save their life. It wasn’t their often poor grammar or punctuation that mattered. It was more their inability to identify the story or the most important facts to communicate to their audience.

If I am honest I think that if I pressed a switch tonight and every scientific paper instantly became freely available online and with a good lay summary it would not make much of a difference to public understanding.

That’s not to say that we should not do it. But I simply think we should be realistic. Not least because I sense that technology and consumer behaviour will take us to a different place entirely as they so often do. Even some speechwriters now start off by first thinking what their speech would look like if summarised in a tweet. Should we ask our scientists do the same and to use this as part of their paper title, for instance?’

In the meantime, if we are to reach a better place with the writing of lay summaries then our approach to them must be more consistent. I am delighted that INVOLVE has been working on some NIHR-wide guidance and tools that will see light of day shortly. But i personally would also like to see us incentivise good practice by, for instance, only releasing grant monies when a good lay summary is agreed. I have tried this on some senior researchers and they didn’t seem to think it was too barmy. Well, no barmier than anything else I’ve suggested.

It is interesting that scientists and writers share a common tool – the notebook. Their livelihoods both depend on it albeit in different ways. One to allow replication. The other to feed creativeness ( although this seems a little too simple a distinction). The investment in its completeness is a mark of professionalism.

And I think that for me is why the lay summary remains such an important component of how we communicate science. It is less about the product itself than the discipline and behaviours it encourages: clarity of thought, appreciation of one’s audience, belief and conviction in one’s ideas.

The lay summary is dead. Long live the lay summary.

At last! A patient-centred statement on the proposed EU Clinical Trials Regulation

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

It goes slowly.

That’s it!

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

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

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

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

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

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

Royal College looks to boost child health research with children’s charter

I am prone to beating up our Royal Colleges for one reason or another.  But, over the last few years, I have grown to admire and respect the work of one of their number in particular – the Royal College of Paediatrics and Child Health (RCPCH).

Yesterday, RCPCH launched a new report entitled ‘Turning the Tide: Harnessing the Power of Child Health Research’ which is part progress report and part agenda for change.  The College’s campaign will aim to:

  • Debunk the myths surrounding clinical trials – and push for the introduction of a system of ‘opting out’ of  studies designed to reduce uncertainties in treatments, rather than ‘opting in’
  • Bring organisations together in a UK “Children’s Research Collaboration” to optimise use of funding for research and raise awareness of the need to strengthen children’s involvement
  • Improve education, research training, and guidance for paediatricians: with the RCPCH pledging to improve research training for all paediatricians  and clear routes into research careers
  • Strengthen the infrastructure for children’s biomedical research in the UK by supporting the establishment of a children’s trials network for non-medicines as well as medicines studies, and children’s health sciences networks to share resources, and promote cross-institutional collaboration between paediatricians, adult physicians, and non-clinical scientists researching the early life origins of adult diseases

There’s a very powerful section in the report about what the NHS should be doing which you could read across many, if not all, other conditions.

Two additional comments.  The idea of a UK Children’s Research Collaboration (UKCRC! funnily enough - see yesterday’s blog) is a good one.  Quite apart from the greater co-ordination of efforts that would result, precedent suggests it will also help amplify the message (one of the points Richard Smith noted in his BMJ blog today about charities needing to work together more).  The arguments in favour are given further force this afternoon by the news that donations to medical research charities are now falling (see AMRC blog).  Quite simply it is about efficiencies of scale.

I’m also delighted that RCPCH and its partners are going ahead with the idea of a ‘children’s charter.’  The College seem to have developed a strong public involvement model of working and I went to one of their meetings with young people and parents a few months ago as part of the ‘Turning the Tide’ preparation work.  This was an idea that came out of that meeting and I am pleased it has gained credence with the report authors including Neena Modi, Vice-President at the College.  In setting out children’s rights and expectations when it comes to research I am sure we would all wish to support and applaud its development.

Text of speech to INVOLVE 2012 – Public involvement in research: would you like that shaken or stirred?

Public involvement in research: would you like that shaken or stirred?

So, ladies and gentlemen, there I was on Saturday afternoon, at the pictures, watching the new James Bond movie, ‘Skyfall.’  This was background research for today you understand; listening to Adele dolefully sing: ‘This is the end’ which is the opening line of the film’s signature tune.  And – as you do at these moments – I thought about public involvement in research.

‘We are certainly not at the end,’ I said to myself.  ‘But we are definitely not at the beginning.  Perhaps you could say that we are at the ‘end of the beginning.’’  And we are certainly in better shape than 007 begins the film.  But perhaps I ought to come to the INVOLVE conference and, like Q, issue everyone a PPI pistol or lay review stun gun, better still, an Aston Martin to help us on our way?

Look out for it on the front of our next newsletter!

Not unlike 007, while the essence of our mission – putting patients first in research – has not changed over all these years, the context certainly has and more so today than perhaps ever before.  That’s why I said yesterday, after Sir Iain Chalmers’ incredibly powerful and provocative keynote speech, that I thought this would be one of, if not the most, important INVOLVE conferences for many a year.

Since I spoke at the INVOLVE conference in 2010 we have had a spending review in which health research has fared comparatively better than most other sectors.  But we have also seen a train of legislation on health and social care that has thrown up many anxieties.  The boundaries of research and how it is conducted have also changed; the public’s role at these margins is often undefined, at best, and ill-considered at worst.  We can be forgiven for feeling shaken, stirred or even both at various times.

Meanwhile we have ourselves been constantly changing attitudes and the way things are done as I think has been amply demonstrated by events here in Nottingham.  This is where we started:

And, if you strip away some of the most obvious words we begin to get a sense of our preoccupations before the opening session.

The enthusiasm that has come across on twitter and in the general chat around the conference hall would suggest that people have come away inspired by what they have seen and the new connections made.

We know we have achieved a great deal but we also know there is much more still to do, much more.  So, in terms of the evolution of public involvement I wonder where you would place us on this picture?

Standing tall perhaps?  Some way off inventing the wheel I think? On the other hand it might just be that we are about to light the fire that transforms our health research system so that it truly puts patients first.    If we are clear about our mission, our values and how we work together going forwards.  If we work collaboratively and choose to make the most of the opportunities ahead of us.  If we empower our colleagues to express their preferences about how public involvement is best poured rather than have it served to them ‘as it comes’ or refused because they are not seen as members of the club.  And I think we are duty-bound to think and act opportunistically about the future however bleak we may feel at times.

Part of the team

How far we have come and, indeed, the dilemmas it can raise was brought into  sharp focus for me when I did some reviewing – yes I do some real work occasionally – just a few weeks ago.  This may have already happened to you but it was the first time for me.

It wasn’t that a number of applications included patients as co-investigators or co-applicants.  Or that many quoted INVOLVE’s guidelines and some had actually read them!  Nor that others went a bit overboard with some aspects of their PPI and advocated hundreds of focus groups to alter the design of a petri dish.  I exaggerate but there were some points when I thought to myself ‘oh gawd’ what have we started a bit like the owner of Fenton in Richmond Park.

No, it was that several of the teams who came along to present their application brought a patient or carer along with them to answer questions.  All excellent you would think.  But in the room several things went through my head.   Is this simply clever marketing – a new bit of game playing to tick the box?   Are we being pitted against one another?  How do I ensure their voice is heard by my fellow members?  How do I establish the sort of dialogue in such a short space of time to establish that they feel genuinely part of the team?

Values

Well, of course, the answer to this dilemma as to the many others we face in public involvement is that we must turn to our values to guide us.  I am indebted to a good colleague who sent me a publication by Community Links which summed up the importance of values as follows:

  • Values are the beginning – they are what inspire us
  • Values are the means – they are what we do and how we do it
  • Values are the end – they are what we strive to achieve

And the fact is that we must return to them time and time again, be honest with ourselves when we have failed to uphold them as well as applaud ourselves when we have.

In 2007 INVOLVE set out how it approaches its work.  But these are not values and now – given our growth and the external pressures we face – the time seems right to invite you to help is crystallise a set of values that will guide us in the future.  So, following this conference, as part of a survey, we will be asking you to help us identify what you think these values should be.   I would hope that both the process and the outcome will be unifying.

Frontiers

For me personally, one of the most important values to run through our veins is a commitment to work collaboratively with others.  We are not and should not behave like the conqueror wishing to take over some fortress or build a new one.  Rather we should, with others, strive to create a different space where research can happen, one which is much richer and more rewarding in meeting patient needs and priorities in the future.   This spirit of partnership will be important in tackling some of the uncertainties ahead.

So let me set out what I think some of these challenges are and suggest some ways forward.

Changes in health and social care

First, are the changes sweeping across our health and social care system following the passage of the Health and Social Care Act earlier this year.  Some of you may have heard Jeremy Taylor from National Voices share his perspective on these yesterday.

Now, if you are in the communications section in the Department of Health, you tend to see the world like this:

I love the unbridled optimism inherent in its neatness don’t you, although it is actually a very helpful graphic when you study it?  Of course, depending on who you listen to about the NHS reforms, you are likely to come away with one of two pictures much as we do when faced with an optical illusion.

But, let’s be honest, most of us feel that things look like this at the moment, don’t we?

Jackson Pollock – who painted this picture called – said: ‘My paintings do not have a centre, but depend on the same amount of interest throughout.’

So perhaps our task is similar – to look at things in a different way to that which we are used too.  It’s not so much about looking for the focal point or foci anymore but identifying where and how we build and support networks to ensure the patient and public interest permeates it all.  I share the concern that public involvement is already a curate’s egg with places where it is good and those where it is poor or not-existent, that this may be amplified as the picture unfolds.

But on the other hand statements by Malcolm Grant, the Chair of the NHS Commissioning Board – who was recently quoted as saying that ‘patient experience’ is the Board’s most important concern – and others, give us license to roam and forage in ways that we could not have before.  The question for us is where do we roam and what are we foraging for?

What I’ve heard from many of you is a desire to use the current state of disruption to forge new alliances with our public involvement colleagues and others in service provision for instance; to map what is happening in public involvement and; to ensure public involvement is central to the workings of new structures such as the Academic Health Sciences Networks (AHSNs) and integrated clinical research networks.  Some of this work we are already taking forward in INVOLVE’s task and finish groups. But the latter one with regard to making public involvement integral to the governance and accountability of networks – to help our colleagues ask challenging questions – is an issue that was also raised by our members at their last meeting in September and which is now an urgent priority for us.

Patient choice

Let me now turn to the issue of patient choice in research.

The irony of the new Health and Social Care Act 2012, given its difficult birth, is that from a research perspective it holds much promise.  There are duties now on all local NHS organisations to ‘promote and advance’ research.  Evidence, patient outcomes and quality are in the ascendancy as drivers of change or so we are told.  Patients will have new levers and some improved ones to exercise their choice to take part in relevant and appropriate research.  These include the NHS Choice Framework on research and the revised NHS Constitution.  The aim is that being part of research should be seen as an integrated part of a patient’s care and treatment.  And again, I think the alliances we build with our colleagues across health and social care provision are going to be powerful in making this happen.

Our priority at this point must be to ensure that improving patient access to research is not interpreted solely as a recruitment drive for clinical trials and other studies.  It needs to be defined in terms of patient outcomes; shared decision-making and knowledge exchange; the information, evidence and tools at people’s disposal to make an informed choice; the stories of other people’s experiences in research; and of course the role of public involvement.   Public involvement is going to be integral to delivering this agenda in a way which is as much shaped by as it does match patient preferences.  In simpler terms it is called moving things closer to the patient.

But perhaps we also need to go through an attitudinal shift in seeing greater participation and engagement as very important consequences, rather than the difficult cousins of, public involvement as we sometimes do.

Can I also add as an aside that, given my other role with NIHR, that it has been very interesting and helpful to me to hear the many perspectives about the impact of research regulation on public involvement and patient access to research.  We can certainly feed this into the work that INVOLVE and others are doing to both  forge a good relationship with the new Health Research Authority (HRA) and shape the environment so that it ‘protects and promotes the public interest’ – which is the HRA’s mission statement.

Patient data

There has already been a great deal of discussion at the conference about the use of patient data for research purposes and INVOLVE has long been involved in this debate, most recently giving evidence to the Caldicott2 review on information governance in health and social care.  We will also be responding to the Government’s public consultation on its proposals for a modified NHS constitution launched last week.

In all our representations about this – whether they have been about access to medical records for research or the potential of ‘big data’ as it is often termed – INVOLVE has stressed the importance of putting the patient first, most obviously in terms of security and confidentiality.

However, thinking ahead, the task is now one of articulating the additional or equivalent rights and expectations that should flow to the patient: being able to control their data in ways which will be familiar to them from other aspects of their ‘online’ life; accessibility of course; a commitment to support them to use data to help prevent ill-health or manage their condition and; to access clinical trials and other data upon which their treatment or care is based.

Rights and expectations

The consultation on the NHS constitution gives us an opportunity to set out this ‘quid pro quo’ for patients.  But I also think that the time has come to – in fact it is well overdue in my opinion when you think that people like Andrew Herxheimer made this same case in 1988 – to lay down the rights of patients in research, a charter which would set out some basic expectations on information, consent, dignity and respect, and feedback from researchers.

The fact is these are perennial issues we have long been concerned about but where the discussion and debate has meandered rather than coalesced.  I would hope that such a charter might give it a new centre of gravity for the future.

Given the global nature of research nowadays – and who can not be affected by what we have seen happen in places such as India – I would hope that this is something our partners and colleagues in other countries would work with us on and, with it, develop a much firmer international partnership of public involvement organisations.  That is very much in my line of sight.

Funders

Finally, I do briefly want to talk about funders and institutions.  Now, some of you will be familiar with the joint publication by INVOLVE and the National Research Ethics Service (NRES) published at the end of last year.

The report was an analysis of the public involvement component of grant applications put before NRES.  The essential story to take from this is that National Institute for Health Research (NIHR) funded applications were far better in terms of their public involvement component than those funded by charities, the NHS, industry or others.

We have been fortunate in the UK that such a sizeable portion of the Government’s health research budget rests with the one organisation – NIHR – that has embraced public involvement in research from its establishment in 2006: to the point that it can be the deciding factor in whether a grant is awarded or not although we still have much work to do.  As INVOLVE’s funder it has also given us a stable and sustainable base from which to work.

But the further afield you look the more disappointing the picture becomes.

Thinking about the researcher’s comment earlier, we need to raise our game with how we engage with and make the compelling case for change which will make them sit up and take notice whether they be charities or industry.

Remembering my own time as Chief Executive of the Association of Medical Research Charities (AMRC), it was interesting to see how its influence with Government grew in tandem with its ability to better tell and quantify its contribution to the overall enterprise.  Anyone reviewing the abstracts from this conference will see how seriously we take the business of impact but perhaps we are not thinking through those impacts so that they resonate most with the preoccupations of our key audiences – the agenda around growth, the forthcoming Research Excellence Framework (REF).

Frontiers

So these are some of the frontiers in public involvement as I see them.  And you will have a chance to identify the priorities you think INVOLVE should take forward in the future in our follow-up survey to the conference that I have already mentioned.

I am also sure that there are many different actors who will play a part in helping us navigate them – and you in this hall encapsulate this: those who strike it out alone by necessity or choice and bring back messages of new things found or not!: the wagon trains of communities who will circle at regular points on their journey before settling in one place; the evangelicals who are good at spreading the word and; the road or rail builders who begin to bind and grow the communities that set out ahead.

Who can be in any doubt for instance about the perennial power of the personal story to shift people’s thinking and improve practice after this conference; or when you read articles as powerful as the piece by Matilda Hale, Professor David Jones and others published in the BMJ just a few weeks ago.

It is about having mutual respect for what each of us can do from our respective positions and their inherent limitations as well as opportunities. To know what each other is doing and how it contributes to the whole.

How we are organised?

So we do need to consider how we organise ourselves and come together in the future.  It is very clear that we are faced with some real development needs or growing pains in terms of our capacity and capability– the size of the community now being called upon to do ever more in the name of public involvement, the variability in public involvement, their skills and development, building networks, the extent to which knowledge is shared between us.

INVOLVE cannot do it alone in fact by working ever more closely with you and you with us will we turn the community represented in this room into a wider movement.  But nor should we be afraid of looking at new ways of working as we have already begun to do in INVOLVE with our project groups.

Thinking about my weekend trip to see the new James Bond movie and the thoughts it had prompted in me about public involvement, as you’ll know, James Bond is fifty years old this year and has been through many transformations.  But we still know it is James Bond because of the recognisability of the values he stands for and his various trademarks.  So it can be for us.

I was heartened when someone in run-up to this conference, said the INVOLVE conference used to be the only place to come to and now it is the place to be.  As Chair that is music to my ears.  That we are able to provide a safe environment where people can share their personal stories and draw strength from others, where we can all pause and reflect on how we approach the future is something we need to hold onto.  What did Abraham Lincoln say:

‘If I had eight hours to chop down a tree, I’d spend six hours sharpening my axe.’

He also said:

 ‘You can not avoid the responsibility of tomorrow by evading it today.’

Conclusion

Our values, collaboration, rights and expectations, asking challenging questions, how we are organised, these are essential building blocks in how we grow in strength as a movement and take the initiative.  For me they are the means for arriving at a point where the choice in public involvement is not about whether it happens, but how it is best served to improve the quality of research so that it meets the needs of the public and patients

Mine is shaken.  With ice and a bit of lemon.  What’s yours?

Round round get around I get around – Caldicott2, patient data, dementia portal and more!

So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week.  Not that I’m a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below).  To think I used to spend three weeks every autumn to attend the party conferences.  It’s like regaining a bit of my life again.

But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2′ website (this is the review looking at information governance in the NHS including use of patient data for research purposes).  Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work.  Look under the Southern Informatics listing on this page.

I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS.  I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients.  I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter.  Let me worry about that one.

I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline).  The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all.  It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.

The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate.  Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week.  It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’  Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute.  I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.

Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website.  Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs.  Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.

This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials.  It is being developed by DeNDRoN and will be developed shortly.  This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s.  The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.

Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places.  Reminds me I must buy Ben Goldacre’s new book to read on my travels.  And this from the US Federal Drugs Administration today seemed relevant.

New science networks herald more fertile ground for health innovation

If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations.

Herewith some new and some not so new ‘kids’ on the block in the world of research.

First, great to see that my good colleague and patient advocate, Derek Stewart, has started his own blog and has got off to a predictably brilliant and incisive start with a piece entitled: ‘What I want from research.’   I’ve also listed his site on my blog roll (see below).

The British Heart Foundation (BHF) has a new report out today entitled ‘Clear and Present Data.’   It examines how use of patient data is integral to medical research.  There’s a youtube video available through the above link and BHF have also published the results of a YouGov survey of public opinion on patient data issues.  Suffice to say that this is all part of a significant push by the medical research charity sector on patient data issues – it is, for instance the theme of AMRC’s parliamentary summer reception on 12th July.

The BHF report makes six recommendations including introducing an opt-out system for use of anonymised data in research (already a Government proposal subject to the outcome of a public consultation later this year), and changing the remit of Caldicott Guardians.  Not sure about the last one – I would need to think it through from a patient perspective in the context of a ‘localised’ NHS.   But good to open the debate.  For the results of the survey and an overview it might be easiest to read the guest spot on the Association of Medical Research Charities (AMRC) blog by Joe Clift from BHF. 

A number of BHF’s recommendations are focused on the HRA, so a brief ‘congratulations’ to the excellent Janet Wisely who was recently appointed Chief Executive there and has really taken up the public involvement challenge.

Finally, the entirely new kids on the block are AHSN’s or Academic Health Science Networks.

The Department of Health published a guidance document about their formation on Friday, and potential networks have been asked to submit ‘expressions of interest.’  AHSNs really do represent a significant and positive enhancement in terms of where research meets the NHS.  It is not so much what they are as an entity as what they will bring together in terms of local NHS organisations, academia, industry, providers etc behind a common purpose.  It is also the comprehensiveness of their remit given that they will not just be responsible for the diffusion of innovation but also the promotion of research including trials and public participation.  I suspect more change will ripple outwards.  The Governance arrangements will, however, need to be strengthened with strong public involvement mechanisms.

Perhaps AHSN’s represent new lava flows in research bringing more fertile grounds for growth with them.

 

 

DH and charities reach acoRD over medical research costs

Divvying up the costs of conducting research in the NHS funded by medical research charities is an intricate business.   Who pays for that research nurse, their time in administering the extra treatment required in a clinical trial, the procedures and equipment needed as part of its conduct, the oversight and governance needed to ensure that things are done properly and with patient care uppermost in mind? When do these costs begin and end?

For both the NHS and charities the concern is to be able to demonstrate appropriate use of respective taxpayer or donor funds, for the purpose for which it has been intended; to have a system for the apportionment of costs which recognises the value and contribution of both partners to making trials happen and does not inadvertently disincentivise either because of perceived unfairness.

It is an issue which has been tussled over for a considerable period of time with the latest discussions dating back to well before I left the Association of Medical Research Charities (AMRC).

Happily the Department of Health and AMRC have now reached agreement and the final document – entitled AcoRD for short – can be found on the Department’s website.  The document – which came out late on Friday – takes a principle-based approach and includes case studies to guide decision-makers.

It is an important document.  Consistent and coherent implementation overseen by both will be crucial.  The linkage of the application of the rules so firmly to those charities who have AMRC membership, is an important amplification of the status AMRC now holds in ensuring quality and excellence in the sector.

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!

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