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MS stem cell breakthrough

Today’s MS stem cell story is running on the front page of today’s hard copy edition of the London Evening Standard because of the strong London connection. So I thought I’d post it here.

Well done to colleagues at the MS Society who have helped fund this work.

http://www.thisislondon.co.uk/standard/article-23974245-new-stem-cell-treatment-hope-for-ms-sufferers.do

Science and the budget, peer review and a spot of crowd-sourcing

Tomorrow is Budget day.  Having just finished AMRC’s own budget and business plan for 2011-2012 all I can say is: George you know where I am if you want to crunch some last minute numbers?

The Financial Times is reporting today that the Chancellor of the Exchequer will announce a £100million cash injection for capital projects to ameliorate the effects on science of cut-backs announced by Pfizer and Novartis since the beginning of the year. 

Since the political message in the last few weeks has been about ‘reform’ I wonder whether we might also see some movement on the research regulation front.  Not a great deal since the word is it will take years rather than months to disassemble the current system before putting in back along the lines suggested by the Academy of Medical Sciences in its report earlier this year.  But something that suggests the Government is committed to speeding up the system and encouraging growth in the sector.  And if they don’t, then it will be a salutory lesson that given a choice between an octopus and myself to make predictions, always go for the octupus. 

Anyway, we shall be posting all the news from the budget here and on Becky’s fantastic policy blog – but visit here first please just so my stats are better than hers.

In other news, you may wish to look at AMRC’s submission to the House of Commons Science and Technology Select Committee inquiry into peer review published today.  As I have said many times before, the UK has a good story to tell on the commitment of research charities to using peer review to allocate their research funding.  Other written evidence submitted to the inquiry can be viewed on the committee’s website.

Plus, I should make mention of the final AMRC/UK National Stem Cell Network public engagement meeting – this time in York on 29th March 2011.  The event will feature the screening of the award winning film ‘Indestructible’ which documents the declining health of a young American motor neurone disease sufferer, including his trip to China for a stem cell therapy.  The film will be followed by a question and answer session with a panel of local experts.

Finally, a soft launch of an exciting new project that AMRC, together with the British Library, UKOLN at the University of Bath, Sage Bionetworks and the Digital Curation Centre and funded by JISC, will be undertaking over the next few months to investigate the potential of crowd- sourced “lay summaries”, derived from UK PubMed Central content, to enable the citizen- patient to better understand research.  The project now has its very own blog which will be populated with a great deal more information very, very soon.

As CEO of a membership association I am used to crowd-surfing.  So this is a new one on me and all the more exciting because of it.

Stem cell research and charities

The world has gone consultation mad.  Another two dropped into my inbox yesterday.  I’m seriously considering booking myself into consultation rehab.  A few days off next week will at least allow me to undergo an intensive consultation detox programme in the meantime.  

For those of you who have set aside today to write a response to a consultation paper here’s my top three tips: keep it short; make the questions work for you and; don’t just send your response to the reply box, share it with others!

One of the more interesting consultations to have appeared since the beginning of the year is the Office for Life Sciences’ stock-take of developments in regenerative medicine building on the work of the UK Stem Cell Initiative.  As you may recall, regenerative medicine (stem cell research)  is a key plank of the MRC’s strategy and delivery plan announced at the end of last year.

Interestingly, the term ‘stem cell research and charities’ is one of the phrases that most often brings people to this blog from search engines – I think the term now used widely is ‘trending.’  For good reason given the news it is getting.  And I thought this was reason enough to do a bit of a focus piece today.

Stem cell research is one of the most exciting avenues for research right now and, given its potential, it is no wonder that charities are increasingly involved in, if not at the forefront, of such work.  I guarantee you that in any given week, a Google news search for medical research will result in several headlines about stem cell research and that at least one will have a charity component.

The hot news in the sector this week has been the British Heart Foundation’s ‘Mending Broken Hearts’ campaign to support a £50 million programme of stem cell research.  You can view one of the videos from that campaign by clicking on the video screen to the right – yes, just an added reason to visit this blog again and please do suggest videos for me to include!  But I was also interested that AMRC’s 126th and newest member charity ‘Restore Burn and Wound Research’ has stem cell research at the heart of its research strategy.  I could, of course, have pointed to many other examples of such work being pursued by other charities.

I asked my colleague, Dr Kieran Breen (Research Director, Parkinson’s UK) to say why such research is important and here’s what he said:

‘One approach for the treatment of Parkinson’s is to replace the nerve cells that have died. Stem cells are a promising tool with which to achieve this aim. These cells can be transformed into specialised nerve cells that can then be transplanted into the brain. There are multiple sources of stem cells. They can be obtained from an embryo at a very early stage of development. Alternatively, they can be generated by reprogramming specialised cells such as skin cells. Each source has its advantages and disadvantages so it is vital that we keep all avenues open in our search for an ultimate cure for Parkinson’s.’

We did a rough search on our database here and excluding collaborative ventures, larger programme grants and capital projects (simply to get a sense of the depth rather than breadth of interest in the sectot) we identified 24 charities that funded 104 projects or fellowships involving stem cells amounting to almost £10million. Given that was up until 31st March 2010, I have no doubt we have seen a further expansion in this profile but the AMRC member charities pursuing this line of research in one way or another and who appeared in our search include the following:

Action Medical Research
Alzheimer’s Research UK
Arthritis Research Campaign
Association for International Cancer Research
Ataxia UK
Bardhan Research and Education Trust of Rotherham Limited
Breakthrough Breast Cancer
Breast Cancer Campaign
British Heart Foundation
British Lung Foundation
Cancer Research UK
Diabetes UK
Fight for Sight (British Eye Research Foundation)
Guy’s & St Thomas’ Charity
Juvenile Diabetes Research Foundation (UK)
Kidney Research UK
Multiple Sclerosis Society
NACC
Parkinson’s Disease Society
Royal College of Surgeons of England
Royal National Institute for the Deaf (RNID)
Sir Jules Thorn Charitable Trust
Wellcome Trust
Yorkshire Cancer Research

I am sure there are others and apologies in advance to any members who I have missed off the list (happy to miss them). 

I feel that one of the difficulties the general public probably has at the moment is in trying to untangle the flood of news stories on stem cell research and get a sense of those discoveries that are near to application with patients.  A number of AMRC members like the MS Society have pages which list some of the most interesting trials.  You might also try searching on the new (in beta phase)  UK Clinical Trials Gateway being established by the National Institute for Health Research (NIHR).  I did a very simple search this morning and it churned out 16 trials.

The fact that we have a strong and stable environment in the UK including a sound legislative framework is an important reason why UK stem cell research is prospering in this country.  You only have to look at the ensuing stop/start debate in the US to understand why.  It’s a crucial facet of our current environment and we must hold on to it whatever changes there might be in arms-length bodies and regulators.

You might be interested to know that AMRC is currently revising its position statement on stem cell research to bring it up-to-date.  Don’t worry, we are not issuing a consultation paper, but I am always open to suggestion of how to make these things be more meaningful to the media, public and our partners.

And finally, if you’d like to read around the subject a bit more I can highly recommend the website of the UK National Stem Cell Network (UKNSCN) as a starting point.  Also, don’t forget the forthcoming public engagement events on stem cell research that AMRC is doing with UKNSCN, in London on 7th March and York on 29th March.  I encourage you to root around some of our member sites as well – for instance the MND Association’s research blog – where they will often post regular updates on what is happening.

I’m off to tear up a consultation paper….

CSR and painting by numbers

We are packing up.  No, no, no, not in that sense.  It is just that we are moving office in a few weeks. 

I am ashamed to say that I am the last of our team to begin the task of separating the recently aquired detritus from the must-keep documents that tell something of our history.  But I am already unearthing a few gems.

Yesterday evening I stumbled across the annual ‘handbooks’ that we published in the eighties and nineties.  These guides list our then member charities along with details of the grants and types of project each of them funded (details we now publish online).  All contain a short foreword.  Curiosity made me look at those from the early eighties:

1983 – ‘…there is no doubt that, generally speaking, university research is well-served by the charities.  The funds available not only provide a significant contribution to the overall level of funding, but are very effective in the way they can provide relatively small amounts of funding when and where this is most needed.’

1984: ‘There is widespread concern that research institutions have been weakened considerably during the last few years.  The charities have responded positively to help support and suatain the biomedical research base in the UK.  It will be noted that over 30% of the member charities have disbursed monies in excess of their income during 1983.  This is an exceptional response ata a difficult time.’

1985: ‘….there can now be little doubt that the dual support system of medical research in the UK is very shaky and there would seem to be a shift in government priorities from the public to the voluntary sector in maintaining the research base in our universities and teaching hospitals…Indeed, it would seem that the only growing contribution to medical research in real terms is that provided by the voluntary sector…’

and 1986: ‘ There can be no excuse for Government to give less; rather we would hope that the evident interest and concern of the British communitywould be reflected in a more generous allocation of public funds to the MRC…’

The hardening of their tone matches the parsimonious treatment of science  during Margaret Thatcher’s first and second terms in office.  But how easily they could fit into the discourse of the last few months.

Tomorrow sees the Comprehensive Spending Review (CSR) announcement.  I suspect it will be a day largely about numbers big and small.  But assessing what it means in practical terms will be more difficult.  Don’t believe what the Government says about CSR being sorted, there’s a whole lot more wheeling and dealing to be done about how the Departments slice up the budgets.  Tomorrow will feel a little like being served a rather burnt creme brulee.  Every sense will tell us how unappetising it is as a dish but we won’t actually know until we have broken through the crust.  And we will need something bigger than a teaspoon to do that.

After tomorrow, and sooner rather than later, we will need to look beyond the numbers and understand the driving philosophy behind them if we are to lead science properly in the coming years.  A number of political commentators have already written that the deficit has been a gift to a Coalition Government intent on radically restructuring government and society.  I suspect that science and technology will not be left out of this and we might get some better idea of the philosphy when the Government publishes its growth paper in the next few months. 

Last night I stumbled across a paper by David Edgerton and Kirsty Hughes, and first published in 1989, entitled ‘ The poverty of science: A critical analysis of scientific and industrial policy under Mrs Thatcher.’   (1) They unpeel and help us understand that administration’s approach to science by making us see the relevance of the wider political contex, what they call a central policy agenda of ‘freeing private enterprise, of reducing intervention and of cuts in public expenditure’ – of re-shaping a slimmed down state to better serve industry.  It is reminiscent of what we are seeing today as Aditya Chakrabortty wrote in The Guardian yesterday

Their criticism of the science lobby at the time is that it failed to understand or challenge this.  They conclude with the line: ‘Flexibility, variety and competition are  needed in studies of science and technology policy, as well as in science itself.’

So, let’s crunch the numbers tomorrow but let us also be wary of painting by numbers in our challenge to government in the coming months and years.

(1) Public Administration Vol 67 Winter 419-433

Science at the Conservative Party Conference – avoiding the herd mentality

I read in the Birmingham local press that about 14,000 people are expected at the Conservative Party Conference.  It certainly seems busier than the preceding two, even on a Sunday evening. 

Each conference has its own feel but common to them all is the herd of grey-suited buffalo (including myself I suppose) that migrates from one to the other.  Others have commented on the fact that there seems to be a distinct lack of diversity at all the conferences – in terms of people and topics of debate – which is perhaps a worrying sign of where politics has got too.  The result is a rather banal preoccupation with sibling rivalries and holes in socks rather than the real issues. 

However, this evening’s Alzheimer’s Research Trust, Anthony Nolan and ABHI fringe was perhaps the most successful of all the three I have chaired over the last few weeks.  Absorbing and really quite distressing stories from family carers Amy (whose daughter Eva had a stem cell transplant for leukaemia) and Alice (who cared for both her husband and mother-in-law during the marathon that is dementia) started off the meeting.

It was excellent to have Earl Howe on the stand too.  Earl Howe is the Minister responsible for medical and health research in the Department of Health.  He seemed in receptive mood and was keen to talk to delegates afterwards (rather than rush off which is what so many politicians seem or have to do these days).

Issues covered included the national dementia strategy.  Earl Howe said the Coalition Government was strongly committed to the policy – indeed he reminded us that it was an explicit part of the Coalition Government joint statement – but that it would be updated with the aim of going further, faster.  Rebecca Wood from the Alzheimer’s Research Trust urged him to consider the delivery aspects of this plan given the wider changes afoot in the NHS.

Earl Howe seemed rightly concerned about the poor funding in other areas such as mental health and conditions where thre is low morbidity but where the impact on quality of life is significant such as hearing impairment.  He asked whether some of this was due to the poor quality of research proposals being put forward and said he was interested in understanding better the underlying causes.  He also asked for more information about the government-funded cord blood banks held in the USA and Spain – the lack of an equivalent approach in the UK means umbilical cords have to be imported from abroad for potential recipients.

I was struck by the comment Alice made in her talk about having to search for information about clinical trials herself rather than hearing about them from her GP or clinicians.  GPs in the audience bristled and rightly voiced the difficulties they are under but I got a sense from Earl Howe that they are on the case of ensuring doctors are incentivised to be research active. This has to be right.

There was much talk of regulation and regulatory hurdles to research.  Earl Howe said ‘we want to remove the barriers to research’ and talked about the importance of the Academy of Medical Sciences’ review of regulation: ‘When we get it we will look very carefully at the legislation and bring forward plans for radical simplification.’ 

He also referred to the North West Exemplar which is a programme aimed at speeding-up the start-up times of clinical trials, saying that the Department would be evaluating the results from this in due course.  I think Ministers have really got their teeth into this agenda but then it is natural territory for Conservatives.

I thought there was quite a strong distinction Earl Howe made between the UK’s strong performance in basic science compared to that in clinical and translational research – he said our record in the latter was poorer and that much ‘work needs to be done.’  Again, referencing regulation, he described a clinical trial which was supposed to be run in England and the Netherlands but where the Dutch element was ready to report its results before the UK part had even started.

He was careful not to be drawn into the Comprehensive Spending Review (CSR) other than to rehearse the statements about the protection of the health budget.  He said the community was ‘rightly anxious’ about the wider science budget held by the Department for Business, Innovation and Skills.

I hope that our meeting avoided the herd mentality, it certainly felt like a good discussion from the top table.

Science at Labour Party Conference – Vital Signs

First, a general observation.  Less than one day here and I have met four ‘Eds’ already – more than in the previous ten years travelling the breadth of the UK. Strange that.  But perhaps when you are faced by David Willetts you need as many ‘Eds’ as you can get.

I came expecting a muted, self-sorrowful Labour Party conference.  But my assumptions have been confounded.  This is a political party that, run out of town six months ago like the shamed sheriff who lost the biggest gunfight of them all, is now appearing on the horizon with renewed appetite for the affray.

Whether you agree with that analogy or not, the Labour Party is showing that its vital signs remain strong.

It was good to see 50+ delegates turn-up to the lunchtime fringe meeting ‘Innovation as cure’ organised by the Alzheimer’s Research Trust, Anthony Nolan and the Association of British Healthcare Industries (ABHI) and chaired by yours truly.

Robert France who was in Liverpool with me, spoke movingly again of the stem cell transplant received by his son, Jackson.  Dionne Priddy described the hopelessness her family felt after her husband, Mark, was diagnosed with pre-senile dementia and entered a rapid decline.  He died earlier this year and Dionne still ran the marathon just days later to raise £14,000 for dementia research.

Questions from the audience of patients, carers, scientists and politicians ranged far and wide – from informed consent to the bonfire of the quangos.  The opposition health spokesperson, Baroness Thornton, said that she and the health team were committed to campaigning for, and championing, health research.  She explained how there would be a review of health policies over the next 12 months in what was intended to be an inconclusive process drawing in external views, with workstreams looking into particular issues.  She expressed concerns over the possible break-up of the HFEA and said that their message on the health white paper was that it is the ‘wrong white paper and the wrong bill at the wrong time.’

The Royal Society meeting this evening (co-hosted by the 1994 Group) was more sparky than that at the Lib Dems. The Shadow Higher Education Minister, David Lammy MP, spoke powerfully about his determination to fight science cuts, expressed concern over the possible disappearance of the ring-fencing of the science budget (I heard it was 50:50 whether it would stay or not, which would be a break with 30 years of history), and argued that the result of the general election was the worst possible outcome for science. With an obvious nod to Tony Benn in the audience he said that Labour’s passion for science ran deep and over many generations.

David Lammy MP

Will Hutton (of the Work Foundation), who often succeeds in turning on its head any preconceived notion you might have held on an issue, argued that he would cut all budgets before laying hands on the science budget since it was the source of growth and wealth creation from which everything else ultimately stems.

He said that those countries who invested most in science and technology would be those than benefited most from leaps in knowledge and innovation in the future.  He also spoke passionately about the science ecosystem and the need to create better systems and institutions – innovation centres – to enable knowledge transfer.

In response to a question from the floor about what the science community could do in the face of the forthcoming challenges, all the panel agreed that the most important thing was to build the largest collaboration of supporters possible.

And given that, can I point you and encourage you to sign the Science is Vital petition (which I signed today).  You’ll also find details of the planned rally and lobby of parliament on 9th and 12th October.

Brain drain in science story

You may have heard the news headlines this morning about the House of Lords Science & Technology Committee letter to the Science Minister, David Willetts, expressing fears about a brain drain of scientists from the UK to other countries.  

Reasons include people’s growing concern over possible cuts in science funding and what it could mean for their work, but also the attractive packages now being put on the table by other countries such as Australia.  You can find the full text of the letter on BBC New Online here.

It makes for sobering reason not least because of the evidence put forward by the six universities contacted by the Committee.  Whatever the Government might say about wanting to be an international centre for science, my fear is that a combination of the CSR and unhelpful policies such as the cap on non-EU migrants is creating a perception that reality does not match Ministerial statements.

Venture capitalists weigh in on science funding debate

I spoke at an interesting event last week organised by OneNucleus, a membership organisation which brings together international life science and healthcare companies.  The audience was packed with representatives of both large and small companies including many biotechs.  It was the day before Vince Cable’s speech and much concern about what he would or would not say.

I see today that veture capitalists – who often provide the seed investment for spin-off companies to take research ideas forward and comercialise them – have weighed into the debate.  It is significant because as you may remember Vince Cable sais he was keen to encourage more spin-offs as part of the Coalition Government’s strategy.  There is an excellent piece on their concerns running on ‘Financial News’ run out of dow jones newswire.

The relevance to charities?  As I found last week many such companies are anxious to forge alliances and partnerships with charities and patient groups as both sources of funding and patient experience that can help them make their products work better for patients.

Cable and Willetts in show of dual support

I did warn you that things would really get going this week….and with two speeches in as many days you can be forgiven if you feel as if you have taken a left hook and then a right hook in quick succession.

Science Minister, David Willetts, was on the stump at a Universities UK conference today.  He used his speech to say that universities have become too focused on research.  You can find a BBC Online piece here.  And I am sure many of you also heard Willetts on the today programme this morning interpreting yesterday’s speech by Vince Cable.  The Independent covers it here.  And just to show that I for one will not be applying a cap to my readership wherever they come from, here’s a piece from WalesOnline which is rather good in capturing views of experts there including nobel prizewinner Sir Martin Evans.

In the hurly burly yesterday it was remiss of me not to mention that the Academy of Medical Sciences had published its response to the Comprehensive Spending Review.

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