An Open Letter to Lord Mandelson

This week ’The Guardian’ published an extract online of my response to Lord Mandelson’s article in its pages about higher education funding.  But I thought I would provide the full text here for interest. 

Dear Editor,

The Business Secretary, Lord Mandelson, presents a stout case for why universities should see tighter budgets as an opportunity for diversifying their funding by, among other things, strengthening their collaboration with business and industry (‘Universities will benefit from tighter budgets in the long-term,’ 19/1/10)

However, it is disappointing that he neglects to mention another source of strength, namely the collaboration and partnership that exists between charities and universities in advancing research of the highest quality for patient benefit. In 2008-2009 the 120 members of the Association of Medical Research Charities (AMRC) spent £935 million on research with the vast majority of this money (approximately 80%) going to higher education institutions. 

Furthermore Lord Mandelson is less clear about how the government plans to assist universities in attracting and incentivising charity and other sources of funding in the future. Our experience of the Charity Research Support Fund (CRSF) set up by the government in 2006 to cover the university costs of conducting charity-funded research is of funding lagging behind our ambitions and of a government reluctant to commit to its long-term future. 

 As a sector we remain committed to funding research through and beyond the economic downturn on behalf of our donors and supporters. But if, as the Science Minister Lord Drayson said last week at the Campaign for Science and Engineering (CaSE) science hustings, we should encourage more public giving to research in the UK as ‘part of the mix,’ the Government must demonstrate its commitment to this by supporting more robustly those incentives it already has in place.

….in other news this week, you may be interested to know that AMRC submitted written evidence to the House of Commons Science and Technology Select Committee inquiry into funding cuts.  They are holding oral evidence sessions during February and it would be good to see the sector asked to come before MPs to give oral evidence.

I promise to write about something other than funding and cuts  next week.

Charity research in the recession

Today’s article in the Law Society Gazette (‘Charities may be in for a difficult year, but there remains cause for hope’) prompts me to report on the results of AMRC’s latest survey of its member charities and how they are faring in the recession.

As you may remember AMRC’s survey in March last year attracted quite a lot of media attention and we said at the time that we would continue to survey members at periodic intervals to inform our work to support members through the economic downturn but also to ensure a well-informed debate.  Our essential message on the back of the survey was that continued public and government support was vital to help medical research charities weather the storm and ensure life-giving research could continue.

Our latest survey conducted in October/November last year had a lower response rate (22%) than our March survey (54%).  However, my sense is that this is probably symptomatic of a more sobre charity view of the operating environment which is no less difficult but around which the headlines and hyperbole is less distorting.  Nonetheless we must place the usual health warnings on the results although I would say that they affirm the narrative we get from charities in our daily contact with them.

Our latest survey’s findings are as follows:

• 68% of member charities who responded described the impact of the recession as ‘very significant’ or ‘significant;’ 28% described the impact of the recession as ‘not very significant at all.’
• In terms of income, investments and corporate giving were quoted as the being most affected by the recession followed by public donations and legacies.
• Member charities have employed a number of tactics to mitigate the impact of the recessions including: co-funding/collaborative partnerships (29%); decreasing the number of awards (19%); decreasing the amount for new awards (19%) or; delayed new initiatives (14%).  A number have adopted more than one of these tactics.
• 54% of member charities said that they had not changed or revised their funding profile or streams as a result of the recession.  However, of those charities that had, most (35%) cited project grants as the focus for any change in approach.
• Looking ahead to the new financial year (2010-2011), 63% of charities expect to keep their research expenditure at the same levels as this year, 21% plan to increase research funding and 8% plan to reduce their funding.

Two quick compare and contrast points about the two surveys we have conducted.

First it is interesting to see that a number of members have gone down the co-funding or partnership route.  You may recall that in our first survey almost two-thirds of charities said they were looking at this as a strategy and it would seem that some have followed through on the idea.

Second, as regards member forecasts for expenditure it is worth recalling that in the March 2009 survey one tenth of member charities who responded (9.3%) said they expected to increase their funding in 2009-2010, approximately half (51.9%) planned to keep research funding at the same level as the previous year, and a quarter (25.9%) planned to reduce their funding.

Our latest results suggest a slightly more optimistic outlook than nine months ago but it is far too early to assume that the sector is through the worst.  I was struck, for instance, by the member who told us: ’We will do our best to maintain this level of commitment in the coming years. But it is by no means certain that this will be possible and we may need to reduce our funding level if our income drops further.’

None of us are out of the woods yet and the real unknown for charities as for many other organisations is how public funding cuts following a general election will affect them directly or indirectly.  Some may not be exposed that much to the fallout, but others – such as those who provide care services as well as funding research - will find a new harsh wind blowing through the wood.

As for any other sector contributing to the UK economy there are lots of factors that contribute to ‘business confidence’ and the unpredictability of what might lie ahead is key.  But given what we do know I see no reason to change our message to donors or government: “we need your support, now”.

Research Impact

At some point I shall steel myself to write a lengthier blog on the subject of evaluating research impact.  Not least because it is a subject dominating the higher education press right now.

However, this week the following report by Action Medical Research – one of our members – came across my desk.   And I thought it was such a good example of the efforts being applied by research charities to assessing the impact of their research funding on behalf of donors that I’d share it now.  The report looks at the impact of its Research Training Fellowship Awards (which it has been running for over 35 years) in terms of furthering science and developing research capacity, and changing clinical practice.  It also looks at what has happened to those who it has awarded Fellowships to in terms of their careers and their ongoing contribution to science and/or medicine.

You’ll find that many medical research charities are now undertaking this sort of work – see the following gap analysis by Breast Cancer Campaign of research in its field for another example although very different in nature – and charities are becoming well-versed in the issues of how to evaluate and communicate impact having lived with the new Charity Commission requirements around demonstrating public benefit for a number of years.

Very happy to include other examples if people send them to me.

Science Debate

The defining difference between national preparedness for snow in a country such as the US and one that is less so, like the UK, is this:  in the States they carry snow chains in their car; in the UK we carry cat litter if we are lucky.

Preparedness – and more specifically preparedness for Government – is something that all the political parties will be trying to convince us of in the run-up to the General Election although I expect they’ll spend more time telling us why they think their counterparts are not fit to govern.

Last night I,  and over 400 others, attended the Campaign for Science and Engineering (CaSE) debate between the three main party political spokespeople for science: Dr Evan Harris MP (Lib Dems); Lord Drayson (Lab – Science Minister) and; Adam Afriyie MP (Conservative) held at IET in London.  If you click here you can listen to the debate again and I highly recommend you do so.

What I expected to be a rather tame affair turned out to be really quite absorbing. 

From a charity point of view I was encouraged by the respective answers each of them gave to an excellent question from Cancer Research UK about the role of charities and the Charity Research Support Fund (CRSF) – the mechanism which really is pivotal to the future of charity research funding in the UK.  But we undoubtedly need to probe them more.  During the exchanges on this question I was also interested in the extent to which each spokesperson expressed a desire to define much better the respective roles of funders and for Government to define how they themselves can be a good partner of charities in funding and promoting research.  And that presents something of a slightly ajar if not open door to us in the sector. 

But a word of caution also.  As seems to be so often the case, there was lots of talk last night about  ’consensus’ and ‘agreement.’  So much so that I came away a little worried about the danger of us all becoming intoxicated by the mantra around partnership and consultation.  For we must not also forget our fundamental role in challenging  the political parties to think harder and deeper about what they are planning. 

Some of you may have seen the Russell Group’s article in The Guardian this week about the threat to universities of budget cuts (the Business Secretary Peter Mandelson has responded stoutly today).  Whether you agree or disagree with the Russell Group’s arguments, the fact is that it has stimulated a debate that now has gone beyond the funding issue to broader and more ideological issues about what universities are for.  And that has to be a good thing.

In the not too distant future AMRC will be publishing its own ‘Challenge to Government’ and I hope that all of us will take Evan Harris’ cue and use it to to ask of, and expect answers from, each of the parties to the specific questions that concern us most.

Only by asking the challenging questions will we be able to decide which party is planning to go into Government with snow chains or cat litter in its boot.

Clinical Trials

A Happy New Year to you all.

Given that we are all likely to have to suffer several months of phoney elections wars not to mention the odd leadership coup that isn’t I thought it would be refreshing to start the year off with a hard, solid fact.

In 2008-2009, AMRC’s member charities funded 166 clinical trials in the UK to the cost of £69 million.  I mention that because today AMRC publishes its response to the European Commission public consultation paper on how well the EU Clinical Trials Directive has worked in practice since it came into law in 2001.

Clinical trials are research studies that involve patients or healthy people and are designed to test new treatments.  In recent years charities have shown increasing interest in funding trials as part of their overall research strategy (for more on what trials are and what they are not, have a look at this excellent leaflet and booklet published by UKCRC). 

UK charities are perhaps unique across Europe in both raising public donations to fund such work and in fulfilling the more traditional patient group role in terms of information and advocacy.  From events I have been involved which have involved Non-Governmental Organisations (NGOs) from other EU countries, funding trials is just not on their radar screen.

So we should be proud of the role that charities play in funding trials in this country.  And we should recognise that the sector has a very important part to play in shaping a revised Clinical Trials Directive in the common interests of patients and science.

Briefly, the current Directive is a good example – of which there seem to be all too many these days – of legislation passed with the right intentions but with little heed paid to the practicalities.  Few if any would argue with the Directive’s aims of promoting patient safety and achieving greater harmonisation and simplification across Member States.  But the result is law which has, at the very least, represented a significant challenge in terms of implementation.  At its worst we have seen an increase in regulation and bureaucracy, associated negative impacts in terms of costs and time-delays.  All of which are counter-productive to the ultimate aim of enabling clinical trials to be set up and conducted, safely and at the same time efficiently

In this month’s issue of The Times” ‘Eureka’ magazine, Mark Henderson has written an interesting piece about what one might call the ’science deficit’ in the EU which lies at the root of  such law reaching the statute book.  I agree with his observations.  But we should not also gloss over the fact that the UK failed to engage early and activly in the process of crafting the Directive last time around.  It would be irresponsible of us to make the same mistake again in making this a better piece of legislation in the interests of patients.

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.

Medical research in Scotland

Last week I was in Scotland to host a meeting of some of our member charities about how we  might support their work to ensure science and research is firmly on the agenda of the Scottish Assembly. 

Held in a curtained-off room in a Starbucks cafe I couldn’t help wonder whether this was how it felt in the early seventies when the first twenty or so CEOs got together as an informal group that is now AMRC.  The enthusiasm and goodwill in the room was heartening and the group will be meeting regularly from now on.

41 out of our 120 member charities fund medical research in Scotland.  Many of these are UK-wide charities.  But there are also some very important home-grown funders such as Medical Research Scotland and the Association of International Cancer Research (AICR) that I admire and respect very much.  Together this group of 41 pumped in about £130 million into medical research last year or about 14% of the total research charity spend in the UK as a whole which is £935 million.  For a not altogether tidy comparison, charities in Canada (which has a population six times that of Scotland) spend about £200 million on medical research.

It is no mean feat and although I hate the colloquilism there is truth in the saying that ‘Scotland punches above it’s weight’ when it comes to medical research.  Having attended Chief Scientists’ meetings in Scotland for some four years now I am increasingly impressed by its sense of identity and vision for research which will be reaffirmed towards the end of the year when it launches a revamped version of its research strategy.  In the meantime it has quickly modeled what is called an Academic Health Sciences Collaboration (AHSC) which aims to harness the research strengths of Aberdeen, Dundee, Edinburgh and Glasgow Universities.

That’s not to say that there are not issues for charities as I heard last week – continuing concerns over the level of Charity Research Support Funds (CRSF) available to cover the indirect or overhead costs for universities receiving charity money, a desire to see quicker adoption of research and new treatments by the health service, an ongoing worry that the Scottish Parliament focuses on building and strengthening a system which can sustain research into both the biggest killers in society such as heart disease but also has a place for work into rare diseases.  A common agenda to that in the rest of the UK but with some important differences and inflections that require a country=specific approach.

So in our all too London-centric world I am pleased that we have got this initiative off the ground.  Indeed with events such as the Scottish Parliament elections coming up in 2011 it is vital that AMRC’s thinking and the way it operates, reflects the concerns of our members active in funding research in Scotland.  And that goes for all the devolved administrations.

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