Home » regulation
Category Archives: regulation
If you believe the Government – any Government in fact – we are all entangled in webbing made of regulation red tape that makes us look like one of those mummies emerging from a tomb in a 60s Hanna Barbara cartoon.
However, I can’t help but agree on this occasion.
I don’t know about you, but returning home in the evenings can become a rather painful process of physically and psychologically shedding the red tape of the day. Even my dogs check the public notices at entrances to parks these days, so sensitised have they become to life in Britain circa 2011.
But it is not the known regulations I worry about; there are regulations we know we know. And we also know there are regulations that are unknown to us; that is to say we know there are some regulations we do not know. But there are also unknown unknown regulations – the ones we don’t know we don’t know. Now, they are the ones that scare me.
And in my opinion, it is often the case that someone’s interpretation of a known regulation can make it become an unknown unknown regulation. I even came up with a new metaphor for how it is affecting our lives – the ‘red tape worm’ – after reading this week’s excellent issue of Eureka about cyberwarfare and computer viruses. I must put that in writing to the new Health Research Agency when it is established this year.
Do you follow? Well, don’t worry if you don’t because you have a chance to cut red tape for yourself – just like pruning the spring shrubs – at the Department for Business Innovation and Skills new ‘Challenge Red Tape Website.’ Health and social care comes up on June 23rd.
On a more serious note, I would probably put the rules that have often stood in the way of patients and members of the public receiving some form of reimbursement to be involved in research, as an example of a known regulation that has, historically, become a baffling set of unknown unknown regulations. First, because of the way the rules have been interpreted up and down the country. Second, because of the way that the way that the Department for Work and Pensions (whose acronym of DWP sounds perversely like a socialist party) dragged its feet to find a way through the mess. Yes, this is an issue which has ‘form’ (pun fully intended) as they say in the police.
However, I am pleased to say that we are now seem in a better place. And the excellent INVOLVE have this week published a rather splendid guide entitled ‘What you need to know about payment: an introductory guide for members of the public who are considering active involvement in NHS, public health or social care research’ which you can find on their website.
I’m off to shed my regulations as they say.
Announcements are like buses. There are none for what seem like days and then several come all at once. My job is to make sure you get on the right one…
NIHR has several announcements out today which AMRC and its members have had some involvement or interest in. The first is the launch of the new model Industry Collaborative Research Agreement (mICRA). It will enable research studies to start much more quickly by enabling people to work through the contractual issues more efficiently, particularly issues around Intellectual Property (IP). AMRC was on the working group that developed it.
I see no reason why the document should not be as reliable, solid, or user-friendly as its automobile namesake, the Nissan Micra, but a lot faster! And if you can tell me what the link is between that car and a well-known UK charity that is an AMRC member charity you can have a free invite to our Science Communication Award ceremony in March.
The second announcement of note is the launch of PROSPERO. Developed by the NIHR’s Centre for Reviews and Dissemination, PROSPERO is the first online facility to register systematic reviewes for research about health and social care from all around the world. And access is free and open to the public. An excellent tool in the drive towards greater transparency and the curtailment of duplication.
And if you’re up for a good debate in this half-term week then my favourite blog of the moment is Alice Bell’s on the recent remarks by the Chief Scientist, John Beddington, calling for science and scientists to be more intolerant of those that spin pseudo-science etc. It has prompted a rather good discussion in my view.
Over the weekend Professor Colin Blakemore said he hoped the Academy of Medical Sciences would come up with radical proposals to end the regulatory mess that holds up UK health research such as clinical trials.
I am not sure whether he will feel today’s report by the Academy lives up to that aspiration, but I do believe it is a good and important document and I suspect so will my members. Why?
For a number of reasons. It prefers careful surgery to the slapdash ‘slash and burn’ approach beloved of short-sighted politicians when talking about regulation or quangos. Its prescription for the future is measured and precise – there are no sledgehammers to crack nuts here. It takes a wide-lens view of the issues, not least the extent to which the NHS has largely been allowed to brush-aside its role in research. And lastly, for an Academy report, there is a refreshing recognition of the importance of public and patient involvement. A glint it may only be, but I will take it for starters.
For AMRC member charities who pulled no punches in their commentary on the current system of research regulation and governance, there will be much support for the recommendations to establish a Health Research Agency (HRA) and to house a National Research Governance Service (NRGS) within it which will focus on speeding up NHS R&D permissions. The fact is that current delays mean it takes far longer than it should to get donor money working for research. Also, some relief that the review panel resisted calls to collapse the myriad functions of many others regulators into the HRA. The more one looked at this idea the more it promised a whole lotta pain with little gain.
Its many proposals for improving the culture around health research are not necessarily new – indeed a number of them have long been muted. But to see them packaged as part of a report which is essentially about better and more efficient delivery of research is extremely important. It moves us away from considering them as soft components of reform. They are just as important as cutting red tape and always have been; ministers must now galvanise this culture change with their own backing.
On patient data issues the Academy nudges rather than propels us towards reform. It focuses on specific levers and measures such as ‘safe havens’ that might get us out of the current fix, while supporting ongoing initiatives such as the Research Capability Programme (RCP) pilots and the North West Exemplar. Its proposal to make researchers part of the clinical care team would likely have benefits beyond just improving recruitment to clinical trials; it would complement the Academy’s overall call to get the front-end of this debate right by improving NHS staff and public awareness of the importance of patient data to research. And it almost goes without saying that I am delighted the Academy strongly endorses AMRC’s public awareness work in this field on behalf of, and with, other UKCRC partners.
The fact that the report cites a considerable number of voices from the patient workshop that AMRC and INVOLVE held in November 2010 is helpful to its overall tone and style and it includes the headlines from our independent report of this event without amendment. It also makes a number of references to the importance of patient and public involvement to the conduct of health research. But it doesn’t quite give the weight or billing to the need to facilitate greater involvement in the way that I and many others see as integral to improving the UK’s performance in clinical research.
And if there is one further criticism I would make, it is that the Academy keeps a respectable distance from prescribing the leadership make-up and governance systems for the new regulator HRA. It would have been good to have seen it float a few ideas and proposals that further demonstrated that it had taken on board the importance of regulation in ensuring public trust and confidence.
I see that Andrew Lansley has been quick off the mark in welcoming the report. Watch this space as they say.
Of the coverage I have seen so far I rather liked this one most.
Ahead of next week’s Academy of Medical Sciences (AMS) much anticipated report on medical research regulation I see The Times and Sunday Times (both paywall) have published pieces this weekend by scientist Professor Colin Blakemore and journalist Brian Deer respectively, offering different perspectives on the issue of regulation.
If you are looking for further background on this issue, a reminder that you can read more about patient views on research regulation in the independent report published by AMRC/INVOLVE on 20th December 2010. And AMRC’s two written submissions to the Academy’s review can be found on our website.
The Academy’s pages on the review are available here.
In a blog ‘exclusive’ – albeit more by technical chance than design – I am today sharing with you the independent report of the AMRC/INVOLVE patient workshop on health research regulation that took part in early November.
We were invited to undertake this important piece of work by the Academy of Medical Sciences (AMS) as part of its review of the regulation and governance of medical research regulation which will report in the New Year. I say important, not just because of the opportunity it represented to feed the patient view into the Academy’s work, but because it also adds to the evidence base on patient attitudes towards research regulation.
You can read the full report by clicking on the health research regulation page tag at the top of the page or by clicking here. The key messages of the report are as follows:
- Patients should be able to expect a National Health Service (NHS) in which research is seen as integral to the delivery of quality care
- Generating a national ambition and appetite for research should be seen as a whole system responsibility of the NHS, those who work in it and patients
- Patients should be placed at the centre of research and given a pivotal role in the shaping, conduct and scrutiny of health research activity and its regulation and governance
- Creating trust is key in engaging with patients and making them feel confident to participate in research
- Good communications and professional attitudes are fundamental to creating the right culture for research including issues around consent
- Regulation and governance should support and remove barriers to – not hinder – patient participation and involvement in health research
- Public involvement in the regulation and governance of research must be robust, well-informed and properly resourced
- Any move towards a single regulator must not be at the loss of expertise and experience that has been built-up within the existing regulatory system.
In the days after the event I recall thinking how the workshop so clearly dispelled the myth that persists in some quarters that patients and the public do not care about, are unable to grapple with, such issues as health research regulation or that they will approach them from an ‘anti-research’ perspective. This is certainly not borne out by the evidence of our workshop.
In fact, you could argue that they set the bar higher than, for instance, health professionals in their expectation of what the NHS should be delivering in the name of research and how it engages with patients who might benefit from involvement. But, quite rightly, part of the deal (my words) they expect from this is a demonstrable commitment to ensuring that they have a say in how the system works. The mutual benefit is a more effective system of regulating research and one that is laid on a foundation of public trust and confidence.
I know that some of my colleagues in patient and public involvement feel a little cynical that the arguments conveyed in the workshop report will be taken on board in the debate about regulation. Ever the optimist, I feel they will be – although perhaps not all in one go. But, if not, then we must continue to make the case outlined in our report.
The report will go up on the AMRC and INVOLVE websites in the next 24-48 hours.
UPDATE: You can find the Growth Review document published jointly by HM Treasury and the Department for Businesss here. A quick skim through its pages suggests a collection of ‘already known’ initiatives with a short section at the back announcing a sector-by-sector consultation on barriers to growth. From what is in the document, it is not clear how this consultation or discussion is going to be co-ordinated as yet.
Earlier today I said…
If you have been reading the newspapers today you’ll know that the on/off again growth white paper is now going to emerge this afternoon as a discussion paper.
Seems likely – given what Willetts and others have been saying over the last six months – that there will be a section on life sciences although I might be wrong. Judging by the press reports the Government is going to ask different sectors to design a blueprint for driving growth in their area. In terms of the life sciences I would have thought that this is a given-job for the Office for Life Sciences which er …..produced a blueprint about 18 months ago now. I am not sure what comes after a blueprint.
Will post more about the impending Picassoesque blueprint era of economic planning by the Coalition Government as we know it.
A quick pass-by to alert you to the fact that we have a new briefing available on the impact on science of the proposed cap on non-EU migrants…and that we have published our response to the Ministry of Justice consultation on the current legislative framework for data protection.
On the former I believe that the House of Lords are due to debate the issue this Thursday 21st October.
Stumbling half-asleep across my hotel room this morning I overheard a spokesman from the Birmingham Symphony Orchestra on the TV saying that every £1 invested in arts in the city generated a further £29 in economic activity. Or something along those lines.
As Orwellian visions filled my mind of a day to come where every minute of our lives is assessed in terms of productivity I quickened my pace. Like most men I really must learn to multi-task better.
The ‘Research to the Rescue’ fringe hosted by BHF, Diabetes UK and the Stroke Association yesterday lunchtime was a storming success. A good 70 or so delegates I think. Earl Howe was in attendance again.
Quote of the day…and I promise I am not biased towards them…was from Betty McBride at BHF who explained why international leadership in science was important said: ‘You don’t get asked to the party unless you are one of the frontrunners.’ But Joe Korner from the Stroke Association came close with: ‘We need to live in an environment of good science that is inspired by government.’
Earl Howe acknowledged the difficulties in enthusing NHS Trusts in medical research and said that NIHR was working on a standards framework which would be a facilitator to enabling Trusts to cut through procedures and make things happen more quickly: ‘I am determined that we will do a lot better in this area.’
Responding to Osborne’s statement about medical research earlier in the day he would not be drawn into a debate about science budgets but said: ‘We [ministers] would be loath to see any dimution of the health research budget in the Department of Health.’ He also said it would be ‘fixed and ring-fenced’.
I was pleased there was a question from the floor about researchers having access to data in an electronic format and the Conservatives have sounded much more positive about this ever since…they came into government.
Earl Howe said that the computerisation of patient records was very important and that the lack of this facility was a real problem. He said that information was central to achieving the coalition government’s plans with regard to the Outcomes Framework etc. He reminded everyone that the Department of Health’s IT strategy consultation document would be out very shortly and that it would ask the community some deep questions to help with this major stream of work.
But Dr Iain Frame from Diabetes UK made the salient point that the difficulties have been overcome in Scotland (all patient information for those suffering from diabetes is made available electronically there) and that the key reason this had happened was ‘political will’.
Charities will be heartened by the fact that Earl Howe acknowledged the importance of the Charity Research Support Fund (CRSF) and was convinced that his counterpart, David Willetts, was ‘very well seized’ with it.
I am off to seize the day.
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.
Two down, one to go. Here’s science related ‘matter’ at the Conservative Party Conference which starts in Birmingham tomorrow.
Birmingham University was of course the venue for the Science Minister, David Willett’s, first speech after taking office. I am looking forward to being one of the hosts when he joins us for a roundtable breakfast on Wednesday. I have been speculating whether he eats ‘clusters’ for breakfast or plain old corn flakes person.
In terms of the formal conference agenda items of interest include debates on ‘Big Society and People Power’ (cue a reminder to sign the Science is Vital peititon which has over 10,000 signatures now including support from the Wellcome Trust) on Sunday afternoon, ‘The Economy’ on Monday morning before lunch, debates on publci services and welfare onTuesday and the Prime Minister and Conservative Party leader, David Cameron, speaks on Wednesday afternoon. You can see the agenda here.
My pick on the fringe….I shall be chairing the ‘Innovation as a cure’ meeting organised by Alzheimer’s Research Trust, Anthony Nolan and ABHI on Sunday evening at 5.45 or there is the Breakthrough Breast Cancer tea party starting at 5.30pm if you prefer, and another of our charities, Ovarian Cancer Action is looking at women’s health at 9.30. The latter features Sarah Wollaston MP who is on the Health Select Committee and a GP.
You can kick off your Monday at 8am with Birmingham Science City which has a fringe entitled ‘Innovation and the Green Revolution.’ A bit later at 12.30pm why not decompress after George Osborne MP’s speech to conference by going to the British Chambers of Commerce debate. I only mention it because the Financial Secretary, Stephen Timms MP, and Shadow Business Minister, Will-Butler-Adams MP, will be speaking. Surely after hearing from this trio we might be able piece together a narrative for economic growth?
But I am sure most of you would prefer to hear David Willetts speak at the NESTA fringe which is taking place at the same time (12.30pm) on the subject of ‘Made in Britain: Building a 21st century economy.’ Either that or hearing Earl Howe, the Department of Health Minister responsible for medical and health research, speak at the ‘Research to the rescue’ fringe at 12.45pm hosted by BHF, Diabetes UK and the Stroke Association.
The Guardian’s engaging Michael White chairs the Health Hotel debate on Monday evening (19.30) and Health Secretary Andrew Lansley MP is speaking at the Health Hotel reception afterwards (which is invitation only sadly, what happened to the days when you could walk in to these things).
The 1994 Group and others hold a lunchtime debate on the future of higher education at 12.30pm on Tuesday and so are Reform with Universities UK at 1.00pm with David Willetts MP invited. This one is called ‘Building the Future: Higher education and economic growth.’ [nb: one of the perils of conferences is the fact that many similarly-themed fringe meetings clash but I find you can run from one to the other if you are quick on your feet).
Also of interest on Tuesday lunchtime is the Asthma UK, Novartis Pharmaceuticals UK Ltd and Smith Institute fringe: ‘Can Health Cuts Be Good For You?’ Andrew Lansley is down to speak at this one which starts at 1.00pm.
The Royal Society takes its ‘Scientific Century’ debate to conference on Tuesday evening at 7.30pm with David Willetts MP, Paul Wellings (Chair of the 1994 Group) and Brian Cox. The Chemical Industries Association pop up this week with their own event at 7.45pm looking at ‘Science Education: The next deficit’ which looks more like a reception but I might be wrong.
And that’s it….a much busier conference than the other two as you might expect. I look forward to seeing you there.
Forgive the headline which is a version of Benjamin Franklin’s: ‘Glass, china, and reputation are easily cracked, and never mended well.’
If you haven’t seen today’s Guardian splash on science cuts then you should really take a look. There is a wealth of detail but the human stories are the most absorbing aspect of the piece as always. At least one of the scientists interviewed (David Proctor), is conducting work funded by medical research charities.
It is a tragedy to see confidence in the future of UK science slipping away among our scientists in this way. It will certainly have an impact of medical research charities and it will undoubtedly mean that it will be harder to make an impact with the donations they receive.
What did Benjamin Franklin also say: ‘It takes many good deeds to build a reputation, and only one bad to lose it.’
…Next week I’ll be blogging from the Conservative Party Conference as usual and we will be publishing our response to the NHS White Paper plus bringing together the latest reports and evidence on public and patient involvement in research.
I think it was Simon Carr in the Independent who said that Ed Milliband opened his arms at the beginning of his speech as if welcoming the assembled earthlings to his world.
I certainly feel as though I have come back down to earth today. An early train back to London from Manchester to a full email box and much, much more. But I haven’t completely left the Labour Party conference behind. I rather enjoyed Anna Lewcock’s piece on the Royal Society of Chemistry blog about Ed Milliband with such insights into the new Labour leader’s thoughts on science.
I also liked this thoughtful article from Fiona Fox at the Science Media Centre offerring a different perspective on the bonfire of the quangos issue. I am supposed to be a guest blogger for exquisite life and I will do something soon but I am rather worried I shall appear like the late guest at a dinner party who appears just before pudding and spills the wine all over the table taking their seat.
I noticed that the Shadow Health Secretary, Andy Burnham MP, made a forceful speech today committing them to fighting the forthcoming NHS changes tooth and nail. He referred a number of times to long-term care costs as a dementia tax. 200 miles south I was lucky to chair a session on effective collaboration at the UK Age Research Forum (UKARF) conference. You can find the press release for the event here. It focuses on the keynote by economist, George Magnus, about the social and economic implications of an ageing population and the need for a more co-ordinated approach to dealing with the issues.
Makes all the talk of ‘new generation’ politics seem suddenly very uninclusive.
Dont forget to sign the Science is Vital petition – you can reach it by clicking on the ‘UK’ logo in the top left-hand corner.
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.
‘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.
This afternoon we have published our response to the Academy of Medical Sciences’ call for evidence on proposals for a single research regulator. You can find the full text if you click on the ‘AMRC Statements’ tab at the top of the page or here.
Our submission is based on a survey of our members and although only a fifth responded, I believe it is indicative of the views across AMRC’s membership. Two quotes from the survey capture the willingness of medical research charities to champion such reform:
‘A single system should be an exemplar for the rest of the world in supporting (not obstructing) a first class research system.’
but also their typical down-to-earth approach to these matters:
‘Regulation should ensure that participation in research studies is safe, but at the same time it should not significantly hinder the research itself and enable it to proceed in an effective and timely manner. We are in favour of any regulatory environment, whether it be a single regulator or multiple regulators, that will ensure this is the case.’
In summary, we believe a single research regulator is a good idea in principle as long as: we are clear about its role and function; it has the necessary capacity, capabilities and resources to deliver on its mission and; it results in a safe, efficient and effective regulatory framework and system. You may also wish to note the comments and ideas on public accountability and the comparatively low rating of public engagement as a priority activity for such a body when compared to other possible functions.
We have energy for the idea but nor do we see it as a magic bullet.