Home » stem cell research
Category Archives: stem cell research
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.
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|
|Bardhan Research and Education Trust of Rotherham Limited|
|Breakthrough Breast Cancer|
|Breast Cancer Campaign|
|British Heart Foundation|
|British Lung Foundation|
|Cancer Research UK|
|Fight for Sight (British Eye Research Foundation)|
|Guy’s & St Thomas’ Charity|
|Juvenile Diabetes Research Foundation (UK)|
|Kidney Research UK|
|Multiple Sclerosis Society|
|Parkinson’s Disease Society|
|Royal College of Surgeons of England|
|Royal National Institute for the Deaf (RNID)|
|Sir Jules Thorn Charitable 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
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.
Rumour has it that there is an outbreak of tonsilitis in the north-west at the moment…here’s hoping Ed Milliband is being kept in isolation until his leader’s speech this afternoon.
One thing I forgot to mention from last night’s meeting was David Lammy’s comment that the coalition government has yet to put together a convincing narrative for its growth strategy. We’ll have to see if Ed Milliband is able to do that today?
Meanwhile, I’ve heard positive things so far in terms of his stance on science. He has been interviewed in a special edition of a newsletter from ‘Scientists for Labour’ which is being hawked around here.
Imran Khan who is Director of the Campaign for Science and Engineering (CaSE) has blogged in The Guardian today about the science challenges facing Ed Milliband.
Andrew Miller MP, chair of the Science Select Committee who attended our breakfast this morning, said he was able to discuss life sciences and science strategy with Ed during the Labour leadership race.
The Manchester Town Hall bell tolled ominously as the 31 organisations around the table inside debated and discussed the Comprehensive Spending Review (CSR). But the meeting covered a lot of ground and I hope it was helpful for Andrew to hear how the interplay between different issues is finely poised and fiddled with at the owner (government’s) risk unless based on sound exertise and advice.
One of the industry representatives there said that their global HQ regarded the UK as a ‘problem child’ not only because of the challenges of the spending review but also because of the poor uptake of medicines here. So, in the same vein, I hope that the Science and Technology Select Committee which can roam across all departments will see cause to look at the whole innovation pipeline in due course.
The town hall bell stopped I am pleased to say which gives me some hope that as another participant said ‘there is still all to play for’ ahead of the CSR announcement on 20th October. Indeed, Andrew Miller encouraged us to bombard parliamentarians and others with views and perspectives now and after that date to ensure our concerns are heard.
Remember, Science is Vital.
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.
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.
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.
‘Hold your nerve’ was the message to his party from Nick Clegg yesterday.
Well, this evening patients and their carers held their nerve by standing in front of conference delegates to tell their personal stories of fighting disease and the way research has helped, or could help, them.
In fact if you happen to be going to any of the remaining two party conferences I fully recommend you attend the Alzheimer’s Research Trust, Anthony Nolan and Association of British Healthcare Industries (ABHI) fringe: ‘Innovation as a cure: how medical research can crack our toughest health problems.’ And not because of my eclectic style of chairing.
At this evening’s event we heard from Robert France about the life-saving stem cell transplant received by his son, Jackson (aged 7) following his diagnosis with leukaemia two years before. Rob gave an engaging account of the pioneering work that has enabled his son to begin to live a normal life. He also described how the opt-in system ffor cord blood donation and the consequent lack of donors in the UK, meant that the stem cells had to be taken from an umbilical cord imported from Australia. I think we all shared his bafflement at how this was possibly good for potential patients in the UK and also about the extra costs to the NHS of having to go abroad in this way.
Vicki Graham talked movingly about the impact that her husband, Jamie’s, diagnosis with Alzheimer’s had had on her and her family, and called for more research into the role that physicial activity might play in helping people to cope with her condition. They had their own personal experience to put forward of Jamie’s walking and rowing which had helped him enormously. Jamie (who joined us on the stand) and his rowing pals have raised over £80,000 for Alzheimer’s research.
Dan Jones from ABHI spoke well about the regulatory hurdles placed before research and the difficulties of getting innovation taken up by the NHS as a whole rather than in pockets around the country.
Baroness Northover who impressed yet again tonight I thought, urged people to get involved in the consultations on the NHS White Paper and on other aspects of emerging policy and shared her own personal story of being a carer.
But it was our patients who stole the show. As they did at the MND Association, Parkinson’s UK, MS Society and Neurological Alliance fringe a little later. This one was about the alarming challenge of brain disease in the UK. Professor Colin Blakemore takes some beating in terms of getting the message across but I thought Jean, who suffers from Motor Neurone Disease, again stole the show. She reminded us of the barriers that await patients when it comes to provision of care.
In fact we should all feel a sense of national shame to hear her account of the frankly bizarre decision-making in our health and social services that means she is not allowed a wheelchair to use outside because she doesn’t need to use a wheelchair all the time that she is indoors.
I think it was Kafka who referred to the ‘slime of a new bureacracy.’ Jean’s story implies quick-sand left by the old and one hopes the Coalition Government can free us all from it.
But, after a good week, I am determined to finish on a positive note. And that is, as I said this evening, there comes a point in much medical research where pioneering science depends on pioneering patients. No wonder they make such good advocates as well.
Policy-making is not immune to trends. The latest seems to be the ’roundtable’ meeting. I blame King Arthur myself (well, they say that trends do come round). But I bet he didn’t meet his knights at 9 or 8am.
This morning AMRC, the BioIndustry Association, Association of British Healthcare Industries and Association of the British Pharmaceutical Industry held a roundtable breakfast entitled ‘Life Sciences – from research to patient.’
It was good to have the Secretary of State for Scotland, Michael Moore MP, there – not least because Scotland has a good story to tell on science – as well as Julian Huppert MP, Roger Williams MP and Evan Harris.
With a wide spectrum of people from patient groups, charities, industry, academia and the NHS in the room the conversation ranged widely across many issues – science funding, regulation, science in parliament. It was a good follow-on from last night’s Royal Society meeting and as ever the politicians were asking for solutions and anwers to the issues facing them.
I was pleased that the Royal College of Surgeons and BMA raised the issue of enabling more doctors to undertake research and the general career path issues facing the clinical academics of the future and a number of people raised the possible issues for clinical research that will confront us with the new health economy that Andrew Lansley is intent on establishing and on which I have blogged before.
There also seemed some positive signs that the Coalition Government understand the need to at least describe the key elements of a long-term strategy on science to accompany the CSR annoucnement and help build confidence about the future.
We spent a good portion of the discussion on the proposed cap on non-EU migrants and its impact on science. Indeed, I get a sense at this week’s conference that there is now real momentum behind amending the plans so that they become more workable for science. Vince Cable’s remarks to the FT at the weekend have been well-reported, but I understand that the Home Affairs Select Committee is now digging around the issue and there certainly seems consensus here that something needs to be done pronto. Suffice to say we need to keep putting the evidence in.
Perhaps this issue will be one of those that might demonstrate how Coalition Government can truly work in the public interest, with one partner articulating at the most senior levels a body of opinion to which a single-party Government might otherwise be impervious. Let’s hope so anyway.
A passing thought before I head back to the conference. There is a strong coalition of public, charity and private sector of organisations here under the banner of the ‘Health Hotel’ which co-ordinate fringe meetings etc and have an exhibition stand.
Given the fact that research and science do not have major billing at this or the other conferences (albeit better than any previous one I have been to) I wonder whether all the science organisations should come together in a ‘Science Lab’ type coalition in future years.
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.
I feel I must dedicate this blog to the gentleman who posted an online comment in response to my letter in The Times yesterday, saying it caused him ‘metaphor indigestion.’ I could almost hear the indefatigable voice of my English teacher, the late Brian Mitchell, behind every word.*
So….like the Red Arrows at one of their seaside displays in summer, science and the Government broke formation last week and hurtled towards eachother in a low pass over the crowded beach of onlookers. It was not quite a collision but it caused enough downdraft to make us all lose balance. For a moment only one hopes.
In terms of the ongoing debate, Brian Cox is interviewed by The Sun today (I never thought I’d link to that paper), rumours continue to abound and some have drawn a distinction between the cyber-activisim it has spurred and the more sedate approach of others. It was ever thus with campaigns. The most important thing must be that this doesn’t disintegrate into a fight among ourselves rather than a debate with government. I know my members’ energies are focused on how to encourage Ministers to be brave enough to believe that science can help them achieve a barrell roll through the recession and recover in a steep climb upwards.
At some point we all need to be flying in formation again. Pigs might fly, I hear you say, but I have very good evidence that pink t-shirts can.
Strange and as incredible as it may seem I wish that I was in Birmingham this week. To attend the British Science Festival of course which started today. Unfortunately their website feels a bit ‘static’ and the conference blog is non too prolific as yet but it is early days I suppose. My hot tip for festival organisers is stick to one site through the years but what do I know….I would still like to go to Birmingham.
Anyway, some of you may have seen that BBC Online have been running the following piece about Lord Sainsbury’s speech there today. In essence he has called on scientists to enter into a more public debate about science. He also refutes the usual knee-jerk accusations that the public don’t understand risk and need to ‘be ‘educated’ or made ‘scientifically literate’ (I’d rather prioritise ensuring people have basic standards of literacy and numeracy first if I was honest as I’m sure my Times critic would).
Suffice to say that Lord Sainsbury has made me feel better about my comment at a David Willetts roundtable last month on the need for the UK to be more radical and strategic in our approach to public engagement on science. For example, this from China. My sense from the aforementioned meeting is that the Minister would like to return to the subject in due course so I hope some good ideas come out of Birmingham while at the same time not forgetting the job is simple at heart – it is about separating fact from fiction as my colleagues who dealt with the Vitamin B story last week will tell you.
And finally, just to mention that tomorrow or Thursday we will be publishing our submission to the Academy of Medical Sciences inquiry into the pros and cons of a single regulator for research as well as announcing 3 new member charities. It’s enough to cause you indigestion just in anticipation isn’t it.
In the meantime, I’m off to join my 121..sorry 124…members flying in formation.
*Apparently it’s the thing to do name your favourite teacher at school as though other people should know them. A little like going on holiday to America and everyone asking if you know Mr/s x.
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.
There has been blanket coverage of JK Rowling’s £10 million donation to set-up a new research clinic at the Edinburgh Centre for Translational Research and quite right too. The Anne Rowling Regenerative Neurology Clinic, named after her mother who had MS, will investigate treatments to slow the progression, and ultimately reverse, the symptoms of MS but will also undertake research into other neurological conditions such as Alzheimer’s and Parkinson’s.
You may be interested to know that the Edinburgh Centre has been supported by an MS Society programme (i.e. long-term) grant since 2007 and you can find out more about the centre and the MS Society’s research funding of it here. There are also some interesting click-throughs to presentations from research staff there about stem cell research etc.
I never fail to be impressed by what Scotland has and is building in terms of medical research capacity and capabilities. I read somewhere that 1 in 8 life scientists in the UK works in Scotland.
By the way, I also noticed today that the Daily Telegraph has included JK Rowling in a list of top philanthropists which is interesting given the ‘Giving Pledge’ announcement over the summer – see my blogs from August. By the way, I wrote to Warren Buffet but nothing yet….
It has been a busy 24 hours in medical research.
Beginning with the sunnier side of things, I am sure few of you will have esacaped the wall-to-wall coverage of the study published yesterday showing Vitamin D exerts an influence over certain genes associated with diseases like multiple sclerosis and arthritis. The research is notable for its international collaborative nature involving a range of funders including the Wellcome Trust, MS Society and Action Medical Research from the charity sector alone. Now, if only they could do something about the weather.
But the coverage for this paled in comparison to that which greeted the decision of US federal court judge, Judge Royce Lamberth, blocking federal funding of human embryonic stem cell research over there. The Washington Post and others are reporting today that President Obama is likely to appeal. The Post also had something on its wires this morning saying that the Senate Health Committee is going to hold hearings over the next few weeks. Its Democrat Chair, Tom Harkin, has come out very strongly against the judge’s decision. And so, in one fell swoop the issue has become very, very political. I notice that in USA Today and other publications, those supporting the judge’s decision are pushing for Congress to make the ultimate decision. And no wonder, with the Democrats likely to lose out in forthcoming elections.
Moving on…there was an excellent piece on BBC Newsnight yesterday picking up on the Muscular Dystrophy Campaign’s (an AMRC member) State of the Nation report saying that the move to GP commissioning under the NHS White Paper reforms will be disastrous particularly for those with complex and highly specialised needs. Jane Field, mother of 12-year old Daniel, talked calmly (and in statements all the more powerful because of their reasoned tone) about the current problems with misdiagnosis and getting specialist help.
I am prone to policy hypochondria at the best of times. But, in talking with our members, my instinctive sense has now hardened into a firm view that the White Paper does not pay enough attention to, nor incentivise strongly enough, medical research. GPs are just not research-minded to put it midly as will be shown by the results of focus group work we have done withGPs and patients and which I hope to post before not too long.
But back to Newsnight… I was particularly struck by the GP on Newsnight yesterday who said there will be winners and losers in the new system. And there was me thinking that I went to my doctor to be treated fairly not to enter a lottery.
Talking of lotteries, yesterday also saw the bowel cancer charities come out in force to express their dismay that NICE had decided not to approve the treatment, bevacizumab – a decision which it has opened to public consultation. I always feel a heretic when I say that the world is far better with NICE than it was before, but then I can recall the days in the early nineties when we had no real transparent decision-making process for evaluating medicines or in determining if and how they were available. Nonetheless, the mismatch between such decisions on the grounds of cost versus patient need and experience are hard to bear.
I continue to feel that there is much work to still to be done to ensure ever-better tools are being used (such as patient reported outcome measures (PROM) to measure the patient experience and ensure they are part of the decision-making process but also to think holistically about the wider costs saved to society by access to treatments. This is an issue that continues to hover for members of AMRC and I suspect it will gain further momentum as NICE assumed a greater role in the new NHS set-up for defining quality outcomes and influencing the research agenda. We pay too little attention to perhaps the biggest translation gap in producing medicines – both how it gets taken-up by the NHS and then the degree to which patients will not adhere to their medicines rgeime. I am looking forward to discussing these points when I meet with the head of NICE, Mike Rawlins, in September.
And finally, some of you may be interested in William Cullerne Bowne’s recent post flagging up Vince Cable’s first speech on science which will take place on 8th September…
Mid-summer it might be, but my sense is that the prospect of a single regulator for research continues to be the leading topic of debate around and about the community (after the Comprehensive Spending Review of course).
My office brought to my attention this series of comment pieces about a single regulator and its impact on the regulation of human fertilisation and embryology research that have appeared in BioNews over the last three weeks. They include articles by Professor Alison Murdoch (Professor of Reproductive Medicine), Ruth Deitch (former Chair of the Human Fertilisation and Embryology Authority (HFEA)), and former MP, Dr Evan Harris. I strongly recommend a read in the interests of balance and it would be excellent to see BioNews publish a similar piece from a patient perspective.
AMRC is in the process of conducting a survey of our 121 members which will form the basis of our submission to the Academy of Medical Sciences’ second call for evidence on regualtion. My instinctive feel of where our members stand, is that they lean towards the idea of a single regulator but not unquestionably. We shall see if my instincts are correct in due course and we will publish our submission as always.
But it interestsed me that all of the above commentators cite the human admixed embryos debate in their arguments. Hindsight is a wonderful thing, particularly when you are on the winning side. But my memory of that debate is that opposition to a merger of the HFEA and Human Tissue Authority (HTA) was as much promoted by a concern around merging two bodies at a time when the latter had barely got its feet under the table. Nor do I feel that any of us covered ourselves in glory in terms of the public engagement efforts during the pre-legislation consultation phase.
In any event, this is all water under the bridge as far as I am concerned. The key from this point onwards is that we are clear about what we want to achieve by establishing a single regulator or new regulatory framework. Also , that whatever body (or bodies) ultimately emerge, all are open to public scruitny. A point that Evan Harris makes very powerfully in his piece.
How such changes will be put before parliament is a question I have yet to fathom. Could they conceivably be part of the expected Bill which will introduce Lansley’s NHS reforms and is likely to be introduced in the Commons in October? Or will it require separate legislation? The concern would be that, if the former and in a parliamentary set-up which is notoriously poor at getting through a Bill in its entirety, regulatory reform as it pertains to research will get short thrift. Or that such debate is hijacked by single issue campaigns. Given this, one would wish at the very least to see pre-legislative scrutiny of the changes by parliamentary committee.
In reading around this subject I remembered the very powerful Reith Lectures by Baroness O’Neill in 2002 entitled ‘A Question of Trust.’ I am glad that I took the time to read them again last night. They are chock full of messages of relevance to the ongoing debate about regulation. The theme that particularly resonated with me was the argument made that trust lies not in increased transparency (indeed it can be counter-productive if over done) but in good governance and people having the opportunity to track back, question, check and assess how decisions are reached.
That process needs to begin in parliament this autumn.
On a lighter note, those setting off on one of those long car journeys in search of a holiday, may wish to pass way the hours with your passengers thinking of the name for a single research regulator.
The best kept secret in London during August is London itself.
With what seems like millions of Londoners and commuters away on holiday, the streets are clear, the buses and trains are sitting-room only, and you can find a parking space with relative ease. The city becomes just that little bit more civilised for four weeks.
And yet the work still seems to come thick and fast for those of us who are holding the fort. Long gone seem the days when you could rely on August being the month to feel whole again.
I have just done a guest blog on the international role played by charities which has appeared today on ResearchMedia Ltd’s leadership blog pages of their website.
And in my habitual Friday catch-up of various reading matter, I rather liked this blog by Daniel Sarewitz that appeared on naturenews earlier in the week. Although talking from a US perspective, the general thrust of his argument around involving the public to shape emerging technologies and think through their impact, is of universal relevance.
As we all begin to develop a new regulatory regime for UK medical research based focused on reducing bureaucracy and managing risk, we must not also forget the opportunity it presents to build a new model of public accountability and involvement.
Have a great weekend.
On the train home tonight when an email came through announcing a second call for evidence by the Academy of Medical Sciences as part of its independent review of medical research regulation. This call for evidence focuses on the Department of Health review of arms-length bodies and particularly the pros and cons of a new research regulator. Looks as though evidence needs to be submitted by 31st August although arrangements seem to be in place to enable evidence to be submitted by a final date of 14th September in view of the holiday period.
We will certainly be submitting evidence and will post it here in due course. But if you have thoughts or comments in the meantime, we are always glad to receive and publish them.