Social media and medical research, a story from Oz

I am in international mood today.  From the United States to Australia.  Unfortunately not via Hawaii.

This was sent to me this morning and it’s basically a report of a paper appearing in the Journal of Internet Medical Research about the viability of using social media in medical research. Interesting snapshot discussion around the pitfalls – i.e. sample bias, suggestion of lower recruitment levels than traditional methods – and summary of projects underway by pharma in using social media.



Social care research opportunities

We don’t talk nearly enough about social care research.  I sometimes wonder whether we have ‘over-medicalised’ the health research agenda at times, so that all we shout about are new medicines and treatments – me included.  It is a trend that seems counter to the needs of our society and also the changes in the way services are delivered to meet these.

NIHR have today posted the presentations from their joint conference with the LSE in November last year detailing funding opportunities in this area.  Worth a look for those in the field, but hopefully it might inspire others to turn their attention to some of the really exciting stuff that needs to be done here.

Share your experience of public involvement in research: INVOLVE 2012 Conference call for presentations


Doing this remotely so apologies if this doesn’t work/come out very well:

INVOLVE 2012: Putting people first in research

Conference call for presentations is now open

Our eighth biennial INVOLVE conference will take place on 13th and 14th November 2012 at the East Midlands Conference Centre in Nottingham.

The conference will bring together members of the public, service users, researchers, research commissioners and representatives of voluntary sector organisations, who share a common interest in public involvement in NHS, public health and social care research.

We are inviting presentations on public involvement in health and social care research that will encourage critical thinking and discussion on the following:

·         how people are involved in research

·         learning and support

·         researching impact

·         future directions

Presentations may take the form of posters, workshops, papers, film, sound recordings, performances and other approaches, and speed sessions.

For further information and to complete the call for presentations application form, visit:

Closing date for applying to do a presentation: Monday 26 March 2012

Science at the Conservative Party Conference

Two down, one to go.  Here’s science related ‘matter’ at the Conservative Party Conference which starts in Birmingham tomorrow.

Birmingham University was of course the venue for the Science Minister, David Willett’s, first speech after taking office.  I am looking forward to being one of the hosts when he joins us for a roundtable breakfast on Wednesday.  I have been speculating whether he eats ‘clusters’ for breakfast or plain old corn flakes person.

In terms of the formal conference agenda items of interest include debates on ‘Big Society and People Power’ (cue a reminder to sign the Science is Vital peititon which has over 10,000 signatures now including support from the Wellcome Trust) on Sunday afternoon, ‘The Economy’ on Monday morning before lunch, debates on publci services and welfare onTuesday and the Prime Minister and Conservative Party leader, David Cameron, speaks on Wednesday afternoon.  You can see the agenda here.

My pick on the fringe….I shall be chairing the ‘Innovation as a cure’ meeting organised by Alzheimer’s Research Trust, Anthony Nolan and ABHI on Sunday evening at 5.45 or there is the Breakthrough Breast Cancer tea party starting at 5.30pm if you prefer, and another of our charities, Ovarian Cancer Action is looking at women’s health at 9.30.  The latter features Sarah Wollaston MP who is on the Health Select Committee and a GP.

You can kick off your Monday at 8am with Birmingham Science City which has a fringe entitled ‘Innovation and the Green Revolution.’  A bit later at 12.30pm why not decompress after George Osborne MP’s speech to conference by going to the British Chambers of Commerce debate.  I only mention it because the Financial Secretary, Stephen Timms MP, and Shadow Business Minister, Will-Butler-Adams MP, will be speaking.  Surely after hearing from this trio we might be able piece together a narrative for economic growth?

But I am sure most of you would prefer to hear David Willetts speak at the NESTA fringe which is taking place at the same time (12.30pm) on the subject of ‘Made in Britain: Building a 21st century economy.’  Either that or hearing Earl Howe, the Department of Health Minister responsible for medical and health research, speak at the ‘Research to the rescue’ fringe at 12.45pm hosted by BHF, Diabetes UK and the Stroke Association.

The Guardian’s engaging Michael White chairs the Health Hotel debate on Monday evening (19.30) and Health Secretary Andrew Lansley MP is speaking at the Health Hotel reception afterwards (which is invitation only sadly, what happened to the days when you could walk in to these things).

The 1994 Group and others hold a lunchtime debate on the future of higher education at 12.30pm on Tuesday and so are Reform with Universities UK at 1.00pm with David Willetts MP invited.  This one is called ‘Building the Future: Higher education and economic growth.’  [nb: one of the perils of conferences is the fact that many similarly-themed fringe meetings clash but I find you can run from one to the other if you are quick on your feet).

Also of interest on Tuesday lunchtime is the Asthma UK, Novartis Pharmaceuticals UK Ltd and Smith Institute fringe: ‘Can Health Cuts Be Good For You?’ Andrew Lansley is down to speak at this one which starts at 1.00pm. 

The Royal Society takes its ‘Scientific Century’ debate to conference on Tuesday evening at 7.30pm with David Willetts MP, Paul Wellings (Chair of the 1994 Group) and Brian Cox.  The Chemical Industries Association pop up this week with their own event at 7.45pm looking at ‘Science Education: The next deficit’ which looks more like a reception but I might be wrong.

And that’s it….a much busier conference than the other two as you might expect.  I look forward to seeing you there.

Unfinished business – clinical research

There has been much to dwell upon since our workshop for member charities ‘Clinical research – working with NIHR’ a fortnight ago.

This is the fourth workshop on clinical research that AMRC has held in as many years.  Each has attracted more delegates than the one before – a fact indicative of the increasing interest among charities in funding clinical trials and studies.  The main difference now – compared to a decade ago – is that we have a system and infrastructure in place to better support their involvement – the National Institute for Health Research (NIHR).

Nonetheless the meeting emerged with some important issues and questions for the future.

Such has been the pace and scale of the changes that have happened under the auspices of NIHR that the ‘how to’ question regularly cropped up in conversation.  NIHR is necessarily a sum of its parts but it is n0t always clear how these parts fit together and relate to one another.  Our members are no different to other funders in needing a journey planner as well as a route planner to help guide them through the complexities.

So, the new National Office for Clinical Research Infrastructure (NOCRI) is an important initiative.  I am pleased that AMRC will be meeting with them in a few short weeks to discuss how they can improve engagement with medical research charities and provide a one-stop shop for guidance and advice.

Since I wrote ‘Not another article about partnership‘ on this site last August and expressed irritation with the system by which NIHR partnership status is awarded (or not) to funders, the Department for Health has instigated a review.  The questions on this topic at the workshop were, therefore, a timely reminder of the need for consistency and transparency in how such decisions are made.

I continue to be concerned that we do not do nearly enough to support research into rare disorders in the UK and this came out in the meeting.  While I can understand the interest in ‘scale’ – i.e. supporting those studies that are based around large patient populations – I sense a growing frustration among member charities who represent people and families coping with rare conditions.

Quite simply they feel that their agenda is being overlooked and I agree with them.  I have blogged before (‘Research of rare quality’ – 7th Sept 2009) on this topic and I hope that AMRC’s seminar in April for rare disorder charities will be an opportunity for this important group plus their colleagues in the sector to rally around some key research issues that we can press together, and press hard.

‘Who pays?’ – whether the charity funder or NHS – in supporting different aspects of supporting clinical has always been a difficult and intricate issue.

New guidance is expected shortly from the Department of Health.  It is intended to clarify existing rules and AMRC, together with a number of member charities, will be meeting with other funders and officials next week to understand better its implications; also to encourage an approach to its implementation and communication which reflects the fundamental contribution of charities to the future of clinical research in the UK.   If we are not to disincentivise some charity funding in this area it is important that this is got right and that potential issues are worked through sooner rather than later.

Yesterday you may have heard the excellent ‘Today‘ programme item about the publication of the MND Association’s manifesto ‘Make MND matter at the General Election.’  Take a look.  It will leave you in no doubt as to the rising sensitivies among charities about ‘bureaucracy and regulatory burdens’ standing in the way of appropriate use of charitable funds.

For, at the end of the day, our first responsibility must always be to our beneficiaries, donors and supporters.  It lies at the root of the sector’s interest in clinical research. It will be the test by which we must always determine our future  involvement.

Patient consent and research

A colleague in the office sent me a link this week to a piece by Professor Anthony Mathur on the BBC Online’s ‘Scrubbing Up’ pages in which he argues that if people want treatment for a heart problem, they should be obliged to take part in the research. 

The very same day I got home to a letter inviting me to take part in UK BioBank.

And at the end of last month NHS Connecting for Health published their ‘Summary of Responses to the Consultation on the Additional Uses of Patient Data.’  

The common theme in all of these, of course, is the issue of patient consent.

I felt a good deal of sympathy when I read Professor Mathur’s piece and the frustrations he and his colleagues feel in getting patients to volunteer for clinical trials and research.   His comment piece relates to a particularly difficult set of circumstances but his observations are not dissimilar to those that you will hear from clinicians and researchers in other areas.  In his conclusion he recommends a new contract between medicine and society. 

In one sense we do have the opening clauses of such, with the new NHS Constitution and its proposals on the use of patient records for research.  And now the Government is following through on the pledges  in that document.  When publishing the report of its public consultation mentioned above the Department of Health said: 

 “It is clear that the public expects their consent to be sought if the data used is identifiable. This means we need to test out how best to secure that consent and properly inform patients about the use of their identifiable medical records. We intend to set up a number of pilots in Hampshire, the Isle of Wight, Birmingham and Nottingham which will explore means of patients opting out of having their records viewed for research purposes. We will report back on testing and offer a preferred mechanism by June 2010.”

That pilot will be important in identifying the right mechanisms for gaining such consent.  But equally important is the need for us to put good information in front of patients and the public consistently and in all health care settings about why their participation is so important. 

Indeed, my sense is that medical research charities feel frustration equal to Professor Mathur’s, but for somewhat different reasons.  Faced with patient populations eager to be part of a clinical trial, they not only find it difficult to know where to direct people but they also lack good information which is going to give a person the knowledge and confidence to follow-through on their interest.  

I hope this is work that AMRC will be able to pursue with a range of partners in 2010.

'Health research cuts'

Today’s ‘exclusive’ in the The Times online headlined ‘Cancer research at risk in scramble for care funds’ has caused understandable concern and outrage. 

It is an interesting piece based on comments made to The Times by the Secretary of State for Health, Andy Burnham MP.  But some background may help us get a better perspective on the story. 

The fact that the Department of Health’s ‘non-urgent research’ is to be raided to pay for the Government’s new pledge on free personal care is not new news and certainly not an exclusive of course.  It was included in the briefings made to journalists at the time of the Prime Minister’s announcement about free care at the Labour Party Conference in October. 

When AMRC approached the Department for clarification at the time we got a strong message back that it was  ‘business as usual’ for the core R&D budget held by the National Institute for Health Research (NIHR).  Even now, I am not sure that Andy Burnham’s only so slightly clearer definition of where the cuts will fall is as menacing as The Times makes out.  Both dementia and cancer are areas where the Government has talked-up its commitment since the party conferences.  So it would be strange for it suddenly to hit reverse gear.  Remember, the article is careful to say ‘could,’ ‘might’ etc. 

Indeed as I wrote this blog I noticed the following breaking news running on the Press Association wires which includes a categorical and welcome rebuttal by the Department of Health of any implication that research into cancer and dementia will be cut.  It is hard to keep up.

Burnham promises more detail when he introduces the personal care legislation into parliament and we should not be complacent – I thought Cancer Research UK’s comment in The Times was spot on. But for me the real menace lies not in this story but in what a new Government will do following the General Election.  Cuts there will surely be, to all areas of policy and we need to think through how we tackle this agenda in a way which avoids us appearing to shout ‘cry wolf’ every time there is a hint of a cut, or worse still inadvertently setting off forest fires that distract attention away from the sort of disinvestment that really does undermine our science base.

The story also highlights one thing we all need to be stressing to current and forthcoming Ministers, MPs and civil servants – that lack of clarity, a lack of transparency and a lack of discussion about such issues is more than likely to cause a proverbial run on the pound – not helpful either to those that Government wants to work or conducive to the task of governing in difficult times.  

I know that elsewhere in the charity sector efforts are being made to persuade Government to engage more openly on the sorts of principles it should be following when deciding which public services to prioritise.  We should be striving to do the same for research.

A Wellcome round-up to the research week

While the Home Office struggles to recover from its Nutt allergy the rest of us have been busy funding and promoting good science.

Our communications officer, Sara, tells me that if I use more searchable terms in my blog headlines I will get more visitors.  ‘What, more than the million or so I receive each day?’ I said.  Anyway, that explains the all-things-to-all-people headline this week.  But, as ever, there is a purpose and I thought it would be interesting to do a sweep across  events and activities of the last seven days and pick those that are relevant to, or have even been driven by, charities.  Some have been in the news.  Some haven’t. 

I visited the NIHR website yesterday and noticed a news item announcing that a new ministerial group on dementia research has been set up with Phil Hope MP in the chair.  This follows the recent summit (see my blog for 22nd July ‘Sums and Summitry’) and the group’s aim will be to drive forward research in the field.  You may recall that the summit itself was a response to the persistent calls by Alzheimer’s and other neurological charities that Government needs to get serious about dementia research.  So this has got to be good news and it shows how charities – with their passion, energy and armed with some good facts – can move the agenda forward. 

Conversely, I was a little disappointed that NIHR have yet to offically news release their recent joint-report with INVOLVE on the impact on patient and public involvement (PPI) in research.  It’s on the INVOLVE site but not theirs.  The report is significant for two reasons.  First, because it adds to the evidence of how involvement can benefit science.  Second, because of the foreword from Sally Davies (Director of R&D at the Department of Health) in which she talks about PPI being the rule and not the exception in the funding of clinical research.  Now that’s a strong signal to the community if ever there was one.  Perhaps we are at last putting behind us the days when you might have been forgiven for thinking that science had an allergy to the very notion of involving patients.  And if you’re looking for further reading on the subject then please also look at AMRC’s ‘Natural Ground’ report on PPI activities by our members and launched at our AGM last month.  The foreword’s pretty good too.

Here in the office I have been monitoring assiduously – as is my nature being a Ceefax child –  the responses of AMRC members to our latest survey about the impact of the recession.  I’ve been encouraged not so much by any significant change in their forecast but by the very level-headed and ongoing commitment by charities to keep backing research come what may.   A third of those who have responded so far, indicate that they have entered into some form of collaborative activity to achieve this for instance.  But this is by no means the only strategy that organisations are employing.  We will report the results of the survey by the end of the year.

Meanwhile my email seems to have been swamped with messages this week about the recently announced European Commission consultation on the EU Clinical Trials Directive which came into law a few years ago.  The consultation closes in early January and its good that across academia and science there is a real desire to be on the ball in submitting responses and sharing evidence about the key issues.  Charities will have an important part to play in providing a patient perspective on the Directive. 

Just how important involving patients in research is to ensuring the right environment for science was highlighted to me when I attended a meeting of EU patient groups in London to discuss the whole clinical trials agenda.  What immediately struck me was the close relationship between funders, patients and academics in the UK compared to other EU countries in funding and promoting clinical trials and studies.  We still have a long way to go, but we also sometimes forget how far we have come.

Of course the big news this week has been the Wellcome Trust’s announcement yesterday about its change in funding strategy.  This is a significant move by the Trust and, at its most simplest, demonstrates the ability of research charities as independent funders to think innovatively and flexibly about the way in which they support science across the UK.  Given that Wellcome Trust is the largest research charity in the UK with considerable influence on the way by whichresearch is funded and advanced more generally, I was pleased to see their statements that they are committed to communicating proactively with researchers and others about the detail of the new Investigator Awards ahead of their introduction.  

Of course, one of the strengths of UK science is its diverse funding base and my sense is that all our members are constantly exploring how best they can support research of patient benefit and they will undoubtedly already be thinking about the opportunities arising out of Wellcome’s announcement.

By the way, the Times Higher piece yesterday was the best I have so far seen on the announcement and it includes an opinion piece from the Wellcome Trust’s Director, Mark Wallport.

An Open Letter to David Cameron

Dear David,

I was pleased to read your speech at the Royal College of Pathologists earlier this week setting out your vision for the NHS and your five priorities for a Department of Public Health were you to form the next Government. 

Many us will be pleased to see you and your front bench colleagues in the Shadow Health team putting greater detail on the plans you would hope to take forward in moving us further and faster towards a truly patient-led NHS.

However, it concerns me – as it will the 120 medical research charities that make up AMRC  – that your speech included no reference to the importance of medical and health research in driving ongoing improvement in the quality of care and treatment that patients and their families can expect from the NHS in the future.  Surely, a commitment to delivering research of the highest quality is a marker of any world-class health system.  It is conspicuous by its absence from your speech.

In recent years we have seen significant investment in clinical research through the National Institute for Health Research (NIHR), increasing collaboration between research funders and others to deliver clinical trials and studies more efficiently, improvements in infrastructure, and a strong public acknowledgement of research as being a core part of what the NHS does in the NHS Constitution.  We have also seen greater patient involvement in the conduct of that research which should give any new Government increasing confidence that this agenda is patient-focused.

Imperfections remain and there is considerable room for improvement, not least with respect to the regulatory environment and excessive bureaucracy.  But this is not the time to take the foot of the pedal.  Indeed, if we wish the UK to be at the forefront of developing medicines and interventions and to seeing these successfully adopted within the NHS, a future Government will need make a sustained policy-commitment to health research with associated funding for many years.  Equally it must address the perennial failure of the NHS to adopt these new therapies, ideas and innovations smartly and efficiently.

For those patients and their families battling life-threatening conditions or suffering from chronic conditions a defining feature of whether the NHS is patient-led or not will be its ability to offer them the opportunity to access new methods of care and treatment.  That is why I was somewhat surprised that your speech did not address either the role of research in the NHS or the ways in which your Government would ensure that the service is focused on innovation.

Yours sincerely,

Simon Denegri

Dialogue by numbers

I am writing this while sitting in a cafe in the exhibition area at the Labour Party Conference in Brighton. Such are the wonders of modern technology! Gordon Brown’s speech is over and the crowds have more or less dispersed. All the action has moved to nearby tv and radio studios where the debate will be neatly packaged and no doubt unpackaged through the evening.  A few conference stragglers are talking behind me while visiting the ‘Going Digital’ stand.

An MP posed a good question to me last week in the course of a meeting with a group of science organisations: ‘Why should Government get into the business of promoting public understanding and dialogue in science?’ he said.
It’s also a pertinent question at a time when the Government continues to consult on its ‘Science and Society strategy for the UK’ – now under the auspices of the Department for Business, Innovation and Skills.  More of that later.

Having pondered the question for the past week my feeling is that there is a spectrum of activity the Government has a responsibility to undertake under the ‘Science and Society’ banner – from educating the public about swine flu at one end I suppose, thru captivating the interest of young people about the wonders of science and what remains for them to explore as the scientists of the future, to making the case for science investment and why scientists use the methods they do.

As important as the agenda are the methods of engagement employed in their furtherance.  Partnership with others will be at their core. And often Government’s role should be as an enabler rather than as a doer.  After all, it is a  gargantuan canvas on which government can not possibly apply all the paint.

Nonetheless I have been struck by the frustration expressed by some of our members about where the Government has so far got to with ‘Science and Society.’  After last year’s fairly lengthy public consultation process it has now set up a number of expert groups to examine more closely some key themes that came out of that consultation.  They are:

  • Science For All: aiming for a cultural shift in attitudes to science
  • Science and the Media: working towards both a science literate media and a media literate scientific community
  • Science and Learning: facilitating the learning of of Science Technology, Engineering and Mathematics
  • Science for Careers: influencing career choice and improving career advice
  • Science and Trust: increasing public trust in the conduct of science
  • I think the frustration of my colleagues is down to several issues: this is all taking a rather long time to put it mildly(some say the expert groups won’t report until well into next year); charity representation on the groups is minimal which is surprising given the third sector’s role in public education and engagement generally; public involvement is non-existent and, frankly; we could probably be learning and achieving just as much by ‘doing’ or learning on the job although I also think it is high time we did a proper critical appraisal of how much has gone into public engagement activities generally.  

    By the way you can read the notes of the last ‘Science for All’ meeting here although it has cancelled its public meeting in London scheduled for next week.  When I read the posted comments on the interactive site I found myself agreeing with a lot of the criticisms.

    Perhaps the problem is that Government is intuitively inclined to want to paint by numbers with each daub of paint carefully marked out by experts and it’s application precise, measured and measurable.  That and perhaps the fact that true engagement is about embracing challenging questions from the public rather than – as Government may wish – always putting out a certain line or message.

    Anyway, I am conscious that I am beginning to sound like a ‘glass half-empty’ person when the fact is that I sincerely hope it will be a case of ‘all’s well that ends well’ when we look back in twelve months time.  But in the meantime, I am keeping my money on what our members are doing day in day out.

    Research of rare quality

    The Government’s Office for the Strategic Co-ordination of Health Research (OSCHR) will at some point in the next few months publish its ‘National Ambitions’ for health research.  Since communications has never been one of OSCHR’s strengths it has been close to impossible to discern quite what this thing will look like, if and when it emerges.

    One of the worries that I have about the ‘National Ambitions’ project – as do many of my members who support research into less common conditions –  is the degree to which they will encompass research into rare diseases.  The issue is less about seeing the name of disease ‘x’ on a page in a report which may or may not sit on a Whitehall shelf.  Rather, it’s the degree to which the report and the messages it conveys, encourages the capacity and capability for such work to continue.   

    Patients with a rare disease generally get a poor deal in the UK whether it’s services and support, or research into their needs.  And perhaps it is a little unfair if unrealistic to expect OSCHR to remedy overnight what has been a systemic issue for many years.   But we do, on the other hand, have every right to expect OSCHR to ensure that the balance of research undertaken in this country reflects the needs of the wider population.  Of course, ‘how’ to achieve this balance is  another question.

    Two weeks ago I was invited to sit on the Joint Selection Committee for the Medical Research Charities Group (MRCG) and Health Research Board of Ireland joint funding scheme.  This scheme was set up in 2006 and provides a stream of Government funding (about £1 million euros) to support research projects that charities have already agreed to part-fund themselves.  Researchers and institutions whose applications to the scheme are successful get the rest of the money from the Government. 

    It has been a highly successful initiative which has enabled many ideas to get off the ground that may have struggled otherwise because of lack of money.  And, while open to charities large and small, it has proved highly attractive to those working in rare disease areas in particular.  For perspective you might be interested to know that there are just over 30 members of the Irish MRCG with a total research expenditure of about 10 million euros I believe.

    I returned from Dublin that night feeling enthused by what I had seen and wondering excitedly whether a similar scheme could be got off the ground in the UK but explicitly targeted at rare diseases.  It will have its pros and cons and should not be seen as a complete solution to the problem.  But it might be one way of helping to ensure what I referred to earlier as ‘balance.’

    Not another article about partnership

    The term ‘partnership’ is now scattered liberally through the narrative we all use for the way in which we work – either as organisations or as individuals.  The highly inventive among us occasionally substitute it with  ‘collaboration’ or even the more arcane ‘working together,’ but partnership is in the ascendant in every sense.

    But I am beginning to feel we are in danger of devaluing real partnership by its increasing use without design or definition and particularly when it is not followed up by matching deeds or behaviours.

    I’m no expert on partnership but it seems to me that its success rests on several things: a shared goal; mutual humility and respect and; a clear definition of roles and expectations.  But, above all, it also requires openness and transparency on all sides and a willingness to be flexible.

    I was only struck by this because in recent weeks a number of our members have run into problems with the National Institute for Health Research (NIHR) and its approach to awarding partnership status to research funders.  Those whose grants attain partnership status are eligible for NHS support costs.  Those that don’t, won’t be.  No one opposes the idea or the principles behind this policy.  But the process by which NIHR decides who is successful leaves much to be desired.

    That process is opaque, long-winded and resource sapping for applicants, seems bureuacratically heavy-handed and ultimately contrary to the partnership ethos it is trying to cement within NHS research.   What is particularly galling for some charities is to learn that their approach to open competition in awarding research grants – one of the three criteria being used by NIHR to make its judgements – is being contested even though it fully meets both AMRC’s widely-accepted standards and the criteria of other bodies like the Higher Education Funding Council for England (HEFCE).   Those charities whose practices are being challenged are given little if any explanation of why and there seems no formal process for appeal.  I can sense rising frustration among medical research charities and I can understand why.

    My sense is that this saga has a few chapters to run yet and AMRC will be meeting with NIHR over the summer.  But it is perhaps symptomatic of the over-regulated world of research that we are putting bureaucracy over judgement.  More importantly, if we are not careful, we are in danger of undermining some valuable partnerships between research funders and the NHS – and for patient benefit I might hasten to add.

    Finally, on a more positive note, our members have long been important voices in raising awareness and understanding of the importance of animal research to the development of new treatments and therapies for patients.  So I wanted to finish with a link to an item that appeared this week on the BBC One Show featuring Rebecca Wood, chief executive of the Alzheimer’s Research Trust, talking about charity funded animal use on medical research:

    Now that’s openness for you.

    Sums and summitry

    Yesterday 30 top scientists called for a tripling of Government expenditure on research into dementia – you may have heard some of them being interviewed on news programmes during the day. 

    Their call was timed to coincide with a day-long summit organised by the Department of Health and Medical Research Council (MRC) which brought together patients, carers, scientists and policy makers to think about a strategy for dementia research.  If the art of summitry is about bringing different perspective together and agreeing a way forward, then they had all the right people there to do it.  Indeed, the Minister Phil Hope MP, said as much in his address.

    The debate around funding continued during the morning and I often get asked why charities lead such calls for more money when they know that Government does not have a bottomless pot to dip into.  It’s a good question and the answer is pretty straightforward. 

    First, for all charities there is a primeval impulse to fight as hard as possible for their cause and for more funds and they wouldn’t be doing their job if they didn’t.  Second, unfair though it may seem at times, those that shout loudest and clearest are the ones that will get noticed more readily.  And third medical research charities know – based on many years of supporting the work of scientists – that more funding is crucial if one is to sustain the progress of previous years and explore new avenues.  Research is not something you can switch on or off like a lightswitch. 

    Nonetheless, just before I left the summit I was pleased to hear the debate move on to issues such as collaboration, areas where the participants could join forces, work that they should consider stop doing, and interventions where funding could be focused in the future.  For as much as the debate is about money, it must also be about ‘how’ and ‘why’ and the ‘quality’ of what is being done.  I  know that my members are acutely aware of this when  they review their research strategy and plans for the future.  Is what we have funded of the highest quality and how do we ensure that this is always uppermost in our minds and of those with whom we work?

    I came away wondering whether the ‘research summit’ was going to be the new art form for taking forward such debates in other areas.  It would be no bad thing, and it’s got to be better than more workshops surely? 

    But successful summits also need good leaders.  And yesterday I felt they had it in a former carer, Barbara, who opened the conference with a passionate but commonsensical talk about what it was like to live with dementia and some of things that would have made her life easier.  

    I am not sure all the participants yesterday listened hard enought to what she had to say first time around so I only hope Barbara had the last word yesterday. 

    We’ll see when the report comes out.

    '….and charities'

    A huge tome literally fell into my lap this morning.  So heavy was the 151 page brochure from the Australian National Health and Medical Research Council (NHMRC) that it broke through the botton of the envelope in which it was sent.

    Coincidentally as I began to flick through its glossy pages this morning, the Office for Life Sciences in London was announcing a blueprint for life sciences which heralded among other things a new initiative to improve international awareness of the UK’s strengths in research.  It would seem everyone is competing to position themselves as the country ‘changing the world’ to paraphrase Australia’s strapline.  I hope our postal service can cope.

    Later this afternoon I will be attending a reception of the All-Party Parliamentary Group on Medical Research to celebrate the very best of medical research in the UK.  Over 60 of AMRC’s now 119 member charities (yes, welcome to the Pharmacy Practice Research Trust and British Orthopaedic Association who joined last week) will be attending – a small but clear sign of the contribution of the charity sector to research in this country.  So I rather gloated on this fact – in that little Englander way we can be prone to – as I read the first 30 pages of NHMRC’s booklet. After all, there wasn’t a mention of charities or NGOs.  Lots of glossy adverts by charities but no mention in the text.

    Then I turned to the OLS blueprint and I wasn’t gloating so much any more.   Don’t get me wrong.  It is a good plan with some excellent interventions proposed that will advance research and, more imp0rtantly, benefit patients.  Some of those ideas – particularly around NICE – have been actively promoted by our members. 

    But, as ever, frustratingly, if you weren’t one of the architects of this plan to date the only nod to the rest of the community came towards the end of the document with the inevitable reference to  ‘…and partners.’  And somewhere else ‘..and charities.’   The same sort of words were of course used in OSCHR’s first progress report over six months ago and even they would admit they haven’t done well in consulting and communicating with our sector.   Indeed, the more the phrase is used and the less demonstrable evidence there is that it is ever followed up upon, the less credible it becomes. 

    The same thought occurred to me last week when the Department of Health issued its letter to NHS Trusts drawing their attention to their responsibilities for promoting innovation and research.  If only they had involved the wider community or even just alerted it to when it had gone out, we might have been able to put out some reinforcing and encouraging messages.  What is it that they say, you need to receive a message seven times at least before you remember it?

    I do worry that the collaborative spirit that seems every more vibrant at local and organisational level isn’t quite reflected at the very top of the tree, that the partnership is not as well oiled as people would have us believe.  It is a shame and, more significantly, a missed opportunity.  Because I thiink that one of the things that marks out the UK from many other countries when it comes to research – and one of the things we should be bottling and selling – is the degree of cohesion and partnership that does exist in doing the work, work in involving academica, industry…and charities.

    So, over the next few months, we will be responding to the OLS blueprint and making sure that we are the beginning of the sentence that currently ends ‘…and charities.’

    Continental drift or moving target?

    Science would seem to be on the move again.

    Last week’s reshuffle saw the Department for Innovation, Universities and Skills (DIUS) – including the science portfolio – merge with the Department for Business, Enterprise and Regulatory Reform (BERR) to become the Department for Business, Innovation and Skills (BIS) under Lord Mandelson.

    Its worth reminding ourselves at this point that this move is only two years – and three ministers – since the last set of departmental changes.

    So is science going through some sort of continental drift across government?  Does it reflect something more worrying?

    I suppose only time will tell.  But, in the meantime, Peter Mandelson would have us think not.

    By all accounts he gave a bullish speech at the Science Museum’s centenary event this week.  His basic message was: science is at the heart of government.   And probably, if you were sat in No10, you would see logical reasons for knitting the business, science and education agendas more closely together if your aim was to innovate your way out of recession.

    In fact Lord Mandelson’s speech and the arguments put forward for changing departments all seem pretty much in line with the government’s philospohy of the last twelve months.  Its also good that science has kept its minister  (and cabinet attendee) in the shape of Lord Drayson.  It’s just the roof over him that has changed.

    But one of my members asked me this week if it all didn’t give the impression of drift rather than evolution, of a loss of corporate memory that became one of the most valuable assets of Lord Sainsbury’s long tenure as science minister.

    Perhaps.  As I say, we’ll see.  In my experience these sorts of departmental changes are more frustrating than anything else in that they upset the momentum behind policy and continuity in the officials delivering it (although we shouldn’t forget that they can also have the reverse effect).

    But I do think that the new department needs to go on something of a commmunications offensive so that no one can be in any doubt about the plan.  And I also important think that its crucial we have robust mechanisms by which to scrutinise what is going on.

    So, three cheers for today’s report by the Innovation, Universities, Science and Skills Select Committee.  They have called for a separate science committe to be set up in parliament to ensure thorough cross-examine what is going on.

    For if science in government is to continue being a moving target we will need a place to hold it still and question it closely.

    Charities in the recession part 2

    I was quite pleased with the media coverage that we got yesterday for our press briefing on the effects of the economic downturn on medical research charities.

    I felt that we had got the difficult news out but had also managed to convey some positive messages about what our members are doing and what the public and policy-makers can do to support them at this time.

    I was struck by The Guardian’s piece in particular though – if only because it had gone to the trouble to ask around some charity sector watchers for their view.

    Medical charities call for help to weather downturn

    I agree with Professor John Mohan from the Third Sector Research Centre that charities should be careful not to ‘cry wolf’ and hope that no one felt that this was the case yesterday.  But the bare fact is that some charities are facing an extremely challenging time at the moment.

    I also wonder whether the evidence on how charitable giving  has held up during previous recessions is only informative up to a point.  After all, isn’t this economic downturn different in its causes?  Is it not also unique in terms of its speed of onset, depth and scale?  Finally, is not the level of exposure of charities so much greater now than it ever was?  But I’ll certainly check out John’s book on The Great Depression.

    The fact is that I would like nothing more than for John Mohan and others to be proved right and for us to be proved wrong.  And finally, while I am not levelling this accusation at yesterday’s commentators, I do feel that there is an air of complacency about the eventual impact of the recession not just on our pockets but also on the way future Government’s will think about public finance in general.

    So we’ll continue to press the case responsibly that, while our members are committed to doing all the right things just now to weather the storm, the support of donors, Government and others is going to be crucial if they are to emerge strongly on the other side.

    I leave the final word to CORE – one of our members who has the following on their website:

    ‘Our income is being seriously affected by the downturn in the economy. We need your help to continue funding research to find cures and new treatments for digestive illnesses. Every donation counts. We receive no money from government or the NHS. We must raise another £100,000 to maintain our research programme.’