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.
Welcome back to those of you who left the rest of us to run the country for two weeks.
I must say that I spent the Bank Holiday weekend in a verily good mood having had a quick peek at the results of our annual member survey. This showed that 98% of our members say we meet their needs and 93% rated our services as good or very good. With results like that I imagine there will be pressure to call in the UN inspectors next time. But given that I am on to pastures new shortly, it’s nice to know I haven’t wreaked havoc and destruction on this fine Association over the last five years.
As my team will tell you, sad person that I am, I live and breathe surveys. I even survey my children regularly on what they want to do/eat/watch/visit etc so bad has it got. But there is one survey that I have been eagerly awaiting for, for some weeks…
The 2011IPSOS Mori Public Attitudes to Science Survey pubished today makes for fascinating reading. In fact I think it is one of those pieces of work that merits much deeper study and analyses over the coming months. Naturally, the PR around it has concentrated on the good news aspects – that 86% of people are amazed by the achievements of science. But, fair game, there has also been a lot in the coverage which has noted the public engagement concerns that come through. The Department for Business, Innovation and Skills news release is here for good measure.
You’ll see that the Science Minister, David Willetts, has responded to this latter challenge – and it is a challenge – by re-iterating his commitment to public engagement. The news release goes on to refer to a number of ongoing programmes which are being funded by the Government. But c’mon David, you can do better than that. These surveys should be the basis if not the prompt for some strategic thinking by the Government. Perhaps it could even be a good first topic for the recomposed Council for Science and Technology (CST) when it next meets. Anyway, the point is, this is news we should use.
In that vein, I noticed a few nuggets of interest that are worthy of further consideration by my own sector:
That only 17% identified charities – or even universities for that matter – as funders of research…is a little disappointing. But the fact that no respondents saw the NHS as a funder of research is simply worrying. However, it doesn’t explain whether they see research as an important activity of the NHS which is a different sort of question.
I was struck by the huge amount of data and discussion about public perceptions around science regulation. That 88% of people feel regulators should communicate and engage with the public sends a strong message to whoever is going to lead the new Health Research Agency (HRA). It also debunks some of the things I have said previouly that a new HRA shouldn’t go OTT on public engagement.
The low understanding of stem cell research and clinical trials suggests we have much more to do to underline the importance of both to indivuals, as well as to the the country’s overall wealth and health.
That people tend to trust scientists funded by universities (83%) and the charities (76%) most is something that I suppose those of us in these sectors can feel pleased about. But lower response rates for the private sector will not serve us well in the long-term. We all need to communicate the important role these valued partners play.
Inevitably the reactions to the survey so far have pinpointed the ‘engagement gap’ that exists between the 66% of people who say scientists should consult the public more, and the more than half who say they are not interested in being involved. But, and this is where can surveys frustrate more than they illuminate, it would be helpful to know what might spark their involvement.
The latter point is the perennial concern for those interested in public engagement. How we choose to interpret it is critical. The detractors of public engagement often point to it as the reason for less effort. I see it as the reason for more. Engagement is often about ensuring that people have ‘access and opportunity,’ it is rarely about marshalling people just to get some satisfying numbers about attendance at the end. Indeed, if interpreted in the latter way, I think we ultimately set ourselves up for failure.
What this survey tells us is that, while we might rejoice in some of its conclusions, we need to think more deeply and work much harder at making science meaningful to, and inclusive of, its many publics.
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.
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….
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
A quick post to say that we have today posted our comments on the NHS White Paper on our website. Our response is the first-listed on the consultations page for 2010 here. If you want to get some idea of the Department of Health perspective on the issues we raise you might like to read my blogs from this week’s Conservative Party Conference – particularly those relating to appearances and speeches by the Minister, Earl Howe.
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.
