Patients and carers will tell you that all that is good or bad about health research can usually be traced to its source. That place where the idea is first formed by scientists. Eureka moment it might be, they will say, but having patients and carers involved from the beginning can save embarrassment for all concerned by ensuring the scientist does not go running into the street without their clothes on.

The story of involvement in research is not dissimilar in many sense to the account of an explorer – a tale of pioneers battling their way upstream through the rapids and rocks to find the source of the river and affect the flow.  But the journey can be markedly different depending on who owns the land where the source lies.

Let’s take industry – pharmaceutical companies and others – for instance. Their upstream research – the source of their drug development work – has been conducted behind closed doors for many years. In recent years those doors have been pushed ajar and now the opening seems to get every wider with each passing day.

Reports like today’s published by the BioIndustry Association and Medicines Discovery Catapult called ‘State of the Discovery Nation’ – which call for a radical change in the pharma model of doing things by ‘humanising’ research and put the needs and priorities of patients first (among other things) – are significant for coming from within the room rather than those outside knocking on the door to get in.

In the same vein you may be interested in this report of a discussion hosted by the Academy of Medical Sciences Forum (which brings together industry with academics, patients, charities and others) on the subject of outcomes in clinical trials. It notes:

‘Using meaningful endpoints which are relevant to regulators, payers, clinicians
and patients requires measurement of factors beyond overall survival. Overall
survival is not the only meaningful outcome and other reliable endpoints are required to
assess the impact of treatment from clinical and patient perspectives. Examples include
impact on pain relief, symptom control and other aspects relating to quality of life.
Treatments may deliver patient benefits in addition to, or instead of, increasing overall
survival. From a patient’s perspective, benefits need to be weighed against the risks and
drawbacks of treatments including impact on quality of life and daily living; quality of life may be at least as important, and potentially more so, than longevity. Impact on quality of life may be harder to capture than ‘objective’ measures of treatment responses, and there is a need for new standardised and validated tools to capture patient-reported outcomes.

And this is quite an interesting article from Pharma Times about the different ways companies such as Merck and Sanofi are involving patients and carers in their upstream work in the drive to patient-centricity (an absolutely horrendous term which feels like one step away from eccentricity or a stop on the Northern Line but I shall forgive them for it on this occasion).  As is this press release that I found on one of the business wire services which suggest patients are affecting the bottom-line for companies in different ways than ever imagined.

So, patients continue to make their way upstream against all the odds. But at least the task does not seem as hopeless as before. At least we now seem to have a paddle in our hands.


A colleague in the office sent me this rather good blog on New Philanthropy Capital.  In it, Angela Kail talks about, or rather asks the question, why charities generally don’t do more to promote the real evidence of their effectiveness rather than rely – or allow others to rely on – anecdotes.

My belief is that research charities still do far too little to connect the two – hard evidence and the rich anecdote.   And by doing so we can often find ourselves falling short in the ‘selling game’ if I put it crudely like that.

AMRC and its member charities have a good story to tell about how we use peer review in terms of quality assurance, or to put it another way, ensuring that the sector funds science of the highest quality.  All AMRC’s members must abide by our principles of peer review and we audit how well they are doing every five years.  We are in the midst of this audit right now but you might wish to look at the results of our last audit on our website (see item for 2nd February 2007). 

…by the way some of you may have seen the announcement today that the House of Commons Science and Technology Select Committee is starting a new inquiry into ‘peer review’ and has called for written evidence to be submitted by 10th March….

But we have not been so good at telling the story of how the high quality science the sector funds is making a difference.  Indeed, this very issue, has cropped-up in every conversation I have had with members this week.  The basic line goes something like this:  We can demonstrate how we ensure we fund the best of the best; but following this through and being able to show impact is proving very difficult. 

My sense is that too often charities tend to separate the hard facts intended for a scientific audience, and the anecdotes that might give them greater meaning to a wider audience.  They think of reporting to their scientific colleagues and the public as two different activities.  They don’t think how the one can support if not enhance the other.  And they mistakenly make the assumption that what will interest one audience won’t interest another.  After all, most of us like a good story don’t we, particularly if it is true?

In simple terms it means that rather than say ‘We fund £x of research including x number of scientists at x laboratory..’ we should be saying ‘I am Simon and I am one of 12 scientists funded by x charity.  Their money enabled me to stay in science and devote mytime to trying to understand the causes of ‘x’ disease.’   Sorry, I know that is a poor example.  But I hope that you can see how the faceless, the purely numerical can become a person, an activity and a story that we can begin to visualise and very likely remember.

Last night I attended the BioIndustry Association’s annual where I heard a great example of this.  

Ahead of the evening’s silent auction, Neil Dickson, who founded the Samantha Dickson Brain Tumour Trust in honour of his daughter, told his story about the research the Trust has funded since 1996 so that it is now the leading funder of research into brain tumours in the UK.  That journey had seen Neil and his wife, Angela, travel far and wide.  Their latest trip had been to the leading international conference in the field which was held in Vienna.  Here, they found out that the UK was second-only to the US in the number of papers being presented and, of these, 60% was work that had been supported by the Trust.  It was a well-told story with an indisputable fact to support it.

Every fact can help tell a story.  A story without fact is merely that – a story.

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.

Last night saw the annual dinner of the All-Party Parliamentary Group on Medical Research. The guest speaker was Dr Venki Ramakrishnan. Venki was awarded the the 2009 Nobel Prize in Chemistry and gave an incisive and refreshingly down-to-earth summary of the challenges and opportunities faced by UK science. The ensuing discussion was chaired expertly by the House of Commons Science & Technology Select Committee Chair, Phil Willis MP.

On the way home I penned some thoughts that occurred to me in the meeting with this blog in mind. But not least because as a politics and legislative studies graduate of Hull University I have a passion for parliament.

In no particular order then:

  1. I wish the harshest critics of parliament and MPs could have been present in the room to hear not just the high standard of debate last night but also the passion and commitment to do the right thing for UK science and sicentists.
  2. There have been a number of articles/blogs I have read in recent months (Mark Henderson in The Times/Ian Gibson in Research Fortnight) which have expressed concern about the ‘science deficit’ (my terminology) in the House of Commons after the General Election because of the anticipated lack of new MPs with a science background. Yet I’ve heard the same argument in every part of the health sector I have ever worked for – from dementia to mental health to the medical profession – and ahead of every General Election.
  3. It’s not that it isn’t important to have some component of the House with a relevant background but nor should we see it as a guaranteed way of ensuring that ‘our’ issue or issues will have prominence and be dealt with appropriately. Indeed, its been my experience that new MPs often want to move away from their previous career and pursue other topics. This is why they have sought a political platform.
  4. What we might need to consider more is how the overall tone and attitude of the new House of Commons towards science and related ethical debates on issues such as stem cell research might differ from now. The House has tended to take a permissive or liberal approach over the last five years. But can we expect the same after the next General Election? And I only say this not because I have done some major study of the views and attitudes of Prospective Parliamentary Candidates (PPC) but because we only have to look towards events in the United States to see how science can suffer or benefit because of the standpoint taken by one or more of the President, Congress and the Senate – in this instance, benefit.
  5. The work of the current, excellent House of Commons Science & Technology Select Committee as well as other established groups such as the Parliamentary and Sceintific Committee will continue to be important in shaping the debate. And the proposal by the Shadow Science Spokesperson, Adam Afriyie MP, that all MPs should have some form of science training [sic] as part of a formal induction to life in the House of Commons has some merit.
  6. But my sense is that we should also be looking for more innovative ways to support MPs to access sound information and advice on science, research and related issues which recognises that their workloads are unlikely to get any lighter. Should there be the equivalent of the Science Media Centre operating in Westminster and Whitehall which has done so much to raise the standards of science reporting in the Uk media? Perhaps there is scope for providing small grants to MPs which they could spend on improving their knowledge in a scientific area or policy issue? What about developing really good internship or mentor programmes for science graduates to work in parliament and for parliamentary staff to get some experience of what it is like working in a lab or a science-focused organisation? And perhaps the many All-Party Groups that exist in parliament could collaborate more in putting together meetings, briefings etc for MPs around commons issues such as research?

No doubt some of this already happens to some degree but I can’t help feeling there are more extensive ways of improving the science base of parliament for the future.

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.

Occasionally I post things up on the blog simply to illustrate different aspects of how UK medical research charities work.

Last week the office noticed this rather cool interactive research map produced by the Meningitis Research Foundation (MRF) which shows the different projects supported by MRF around the world.  A good example is its project looking at ways to improve the outcome of bacterial meningitis in newborn infants in Malawi.

I post it because my sense is that many people are probably unaware of the international links being forged by UK medical research charities and the increasingly global view they are taking of the science they support.    And supporting individual projects is just the tip of the iceberg.

Many of our members have scientists from different countries take part in their peer review process for awarding grants.  Often they will host international symposia in the UK where scientists, clinicians and patients from around the world can hear about the latest developments in the field and inform its future direction.  And it is not uncommon to find these same organisations play a leading role in the international networks of patient and/or funding organisations so important to ensuring efforts around the globe are collaborative if not at least complementary.

And it is not just large charities or the UK-arm of an international charity.  Quite often AMRC is asked by small members for help and advice in drawing together international experts in a way which is going to ensure the research they fund is relevant and of the highest quality.

I seem to remember hearing a corporate slogan once which went along the lines of ‘the sun never sets on…’ – all to demonstrate their credentials as a 24 hour global operation.  A little corny I know, but a saying which becomes  ever more apt to describe the way in which charities are thinking about the research they fund.

It normally grates on me when someone makes passing reference to football or their favourite team in search of the common touch.  So forgive me for doing the same just this once.  It does serve a purpose…..of sorts.

I am sure that those familiar with football punditry – and even those who are not – will have heard experts refer admiringly to a player having ‘pace, power, aggression and two good feet.’  They are seen as the defining qualities of a good footballer.  Something which I was not.

Like football, pundits and punditry about the charity sector (who me?) are not commodities in short supply.  In fact we can talk for England given the chance.  And particularly when times are difficult.  But, unsurprisingly, it’s the insights of those immersed in the work and those of our supporters that really strike home when out and about.  Much more so than the words of the detached analyst whose opinion may nonetheless be true. 

Over the past forntight I have had much time to talk to our member charities attending a range of AMRC events; our workshop  ‘Working with NIHR,’ not to mention seminars on ‘The UK’s international competitiveness in research’ and public and patient involvement (PPI) in research prioritisation and commissioning.  The mood has often been positive but reflective about our own defining qualities.

A few weeks ago Mark Walport (Wellcome Trust) wrote a rather good article in Research Fortnight in which he urged medical research charities to retain their strengths as ‘independent, innovative and creative institutions.’ I would agree.  But I would add at least two more to the list both of which have come through so clearly for me over the past few weeks.

First, passion. For every medical research charity there is a compelling and often very personal story behind its foundation.  Take the Juvenile Diabetes Research Foundation (JDRF) which was set up in the US 40 years ago by parents of children with type 1 diabetes.  JDRF now spends millions on research in the UK each year and continues to drive on towards its mission to cure this disease.  It is propelled by the original story of its founders but also the stories of countless people it has helped along the way.  They, like our other members, are driven by the desire to provide better answers for patients. 

Second, ‘trust.’  Whichever way you look at it , UK charities have a unique and strong bond of trust with their donors and supporters.  To paraphrase one of my colleagues: in other countries, donors will give significant amounts of money to their favourite insitution or hospital with little heed paid to whether what is being done there is either good or not so good.  In the UK, when donors give charities their money they trust us to have the proper system in place to ensure it is put towards science that will benefit patients and is of the highest quality.

So, perhaps there is a another to add to the list – a devotion to quality. 

Trust, Passion, Quality.