Less haste and more speed is better for research and better for patients

The Government has today announced an Innovative Medicines and MedTech Review, beginning in early 2015. The Minister for Life Sciences, George Freeman MP, has set out a bold vision for cutting drastically the time it takes to develop and give patients access to new medicines and innovation. This news release lays out the basic aims of the review.

The language of urgency and desperation is a common accompaniment to the way in which medical research is pitched to the public.

Charities make ‘urgent appeals’ to our generosity.  Drug companies strain at the leash, only held back, they say, by red tape and grey bureaucrats.  Researchers implore us to come forward and ‘make it happen.’  Patients warn us of the human costs unless there is ‘immediate action.’ So it goes on.

They are right – or at least have every right, to make such calls. But we should be aware of the dangers to research and to patients of creating a society that is so pro-science, it forgets to ask important questions of science and itself for the matter.

At the moment, medical research has a burgeoning ‘fast movement.’  ‘Empower: Access to Medicines’ is one such lobby group that exemplifies how this agenda has come to the fore. Last week at the World Orphan Drug Congress I was struck by the number of patient organisations who came to the stand or spoke from the floor about the need for faster development times for new treatments, and speedier access to them.

Few people would deny that it takes a bafflingly long time and mind-boggling amount of money to produce new medicine; that there are surely ways in which this process can be shorted and cheapened. So no wonder Governments, major funders and regulators alike are doing all they can to make this happen – from adaptive licensing to the Health Research Authority’s (HRA) plans to establish a single approval process for approving research to happen in the NHS. (At the moment it seems everyone gets involved even the hospital porter!).

The more dangerous element to this movement is that which puts the pressure of demand – desperate and legitimate though it may be – in the driving seat. So much so that it tips the scale back towards a day when people were treated no better than guinea pigs, when doctors acted in haste or pure self-interest.

This is what is so worrying about the Medical Innovation Bill. In spite of what some patient advocates say, I fundamentally believe its passage would do serious damage to all that has been achieved in putting patient rights at the heart of the research agenda. Not to mention what it means for the enduring respect we have paid to ensuring research quality. In that sense it is the veritable wolf in sheep’s clothing. Goodness knows how it has got this far.

Clearly, as patients and the public, we have an important role in advocating for research to take place more quickly and for the fruits of its success to be made widely available. But we also have a significant role to play as active participants in research, working with researchers to make things work better and more efficiently. From being study participants to shaping its design and delivery. As the success of our clinical research networks bears witness to.

Patients and the public should be part of the pit crew not goading from the stands. That’s how we get faster, better research.

An invitation from the Health Research Authority (HRA): #patientsasregulatorypartners

Invitation to contribute to workshops about the Health Research Authority’s  Public Involvement Strategy

The Health Research Authority is running two workshops to give people interested in our strategy an opportunity to discuss it and how we put it into action. We would like these to include researchers and research funders as well as patients and the public and those involved in developing and managing patient and public involvement
The first workshop will be on Monday November 25th 2013 at Friends House, Euston, London and the second on Tuesday November 26th 2013 in Birmingham at De Vere Venues Colmore Gate in the city centre near Snow Hill railway station.
Both workshops will be run from 11.00 to 14.00 (including lunch) and will be limited to around 40 participants.
The workshops will be mainly about how the HRA uses its influence to support public involvement in health research more widely but also include the opportunity to hear about and discuss other aspects of feedback received to date on the strategy.
If you are interested in attending please email us at hrapublicinvolvement@nhs.net.
We will cover travel and subsistence expenses for members of the public (as defined in Appendix A of our strategy) who attend the workshops. They may also be eligible for a payment for their contribution of £75. Anyone who is in receipt of state benefits should contact us in advance to discuss arrangements to cover both expenses and payment for time.

Ridding ourselves of the 'red tape' worm

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.

mICRA, PROSPERO, Beddington and Bell

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.

Rawlins Review: Academy lays down law on health research regulation

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.

Regulating research – Blakemore/Deer comment pieces + AMRC background

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.

The not quite white paper on growth

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.

Earl Howe's Speech at the AMRC AGM

 I thought you may be interested in this extract from the Health Minister, Earl Howe’s, speech to out AGM on Wednesday:

It also gives me pleasure to note [that] AMRC member expenditure on research having exceeded £1 billion for the year for the first time. Given the economic circumstances, I think this is something about which you should all feel immensely proud.

 Research history

 Indeed, that feeling of pride should be shared by everyone involved in medical research.

 Since the NHS was established in 1948, research has brought incalculable benefits for patients. Treatments have been improved. Inequalities have been reduced. Productivity has been increased.

 The contribution made by medical research charities in facilitating these benefits has been, and continues to be, enormous.  The lives of people with wide-ranging needs – those with mental illness, long-term conditions, dementia – change because of the work done by the organisations represented in this room.

The coalition greatly values the efforts and dedication of all involved: from those who raise money through sponsored activities, to those who plan and implement strategy. For that to still be happening during a time of economic uncertainty is truly heartwarming.

Together with funders and donors in the public and private sectors, research charities have helped place this nation at the forefront of medical research.  Currently, the UK ranks second to the USA in share of world citations to clinical papers.

And it is our job to support the research community in its efforts.

In 1991, four years after the AMRC was established, it was a Conservative government that set up the NHS Research and Development programme.  I was but a humble transport whip back then.

Now, nineteen years later, the commitment of the coalition government to health research has been emphasised both in the Strategic Spending Review and in our White Paper, “Equity and Excellence: Liberating the NHS”.

It’s on record. It’s there for everyone to see. Because we know how central research is to every aspect of the NHS.

Future direction

 But of course, commitment is nothing without actual progress. So what can you, the people in this room, expect to see from us? How will we enable the research community to keep on innovating?

To start off, the coalition will demonstrate its dedication by increasing spending on health research in real terms over the next four years. 

Some may question the wisdom of this increase, given funds are so tight. But to them I say – this is precisely the time where innovation, investigation and invention becomes most valuable.

Research saves money. I get the impression I may be preaching to the converted, eulogising medical research with the Association of Medical Research Charities. But it’s true. It allows us to identify new ways of preventing, diagnosing and treating disease. It is essential if we are to increase the quality and productivity of the NHS, which are, after all, the best ways of making efficiency savings.

From the extra funding, we will provide support to the National Institute for Health Research so it can play a full role in pulling basic scientific advances into tangible benefits for patients and the economy. 

We are also providing £220 million of capital funding for the UK Centre for Medical Research and Innovation. I attended the signing ceremony the other day and am tremendously excited about the venture.  The Centre is due to open in 2015. It will help drive forward the prevention treatment of disease by researching biology, developing technologies and engaging with the public.

The Department for Business, Innovation and Skills will ensure that Medical Research Council expenditure is maintained in real terms, ensuring total health research funding will increase across all sectors.

And through the intrinsic bond between the NHS and universities, the National Institute for Health Research – NIHR – is turning laboratory-based discoveries into cutting-edge treatments that make a real difference to people’s lives. Through the internationally-recognised Biomedical Research Centres and Units, the NIHR is helping translate pure research into practical success.

That is something particularly relevant to us here today. I know that 37% of all studies supported through the NIHR Clinical Research Network are funded by AMRC members. I applaud your input in this work.

Earlier this year I visited one of these Units at Moorfield Eye Hospital. The quality and inventiveness of the work I saw was quite staggering. Amongst other things, I was shown the projects currently being developed by NIHR-supported teams on glaucoma. They were developing ways to identify glaucoma sooner, treat it better and research it more thoroughly than ever before.

This work is invaluable. So the White Paper explicitly states that we will continue to promote the role of Biomedical Research Centres and Units, Academic Health Science Centres and Collaborations for Leadership in Applied Health Research and Care, to develop research and turn it into improvements in education and patient care.

Innovation pathway

Of course, for this to happen, there need to be efficient ways for innovations to reach the patients that need them. This must be across the NHS.  

That is the difference, I think, between invention and innovation – successful application.

It is crucial that best practice, innovative ways of working and new technologies are not only identified and adopted locally, but are shared and spread across the NHS.  Our challenge – both mine and yours – is to achieve the systematic adoption and diffusion of innovation at pace and scale. To make the NHS a true champion of innovation.

This means we must not only enable innovation, but also encourage a climate in which adoption of innovation is welcomed. In which people believe innovation will improve their lives and their work.

My department will be focusing on greater decentralisation, greater responsibility for GPs and patients and a Big Society. This will help create incentives to encourage the systematic adoption of innovation, empowering patients and society by putting them in control. It will create a ‘pull’ – a demand – for new ideas and technologies as well as ‘push’ – a supply.

We want to encourage the uptake of new medicines. So we have developed new national metrics and more are in the pipeline. These metrics will show clinicians what their international peers are prescribing.

And we will reform the payments and incentives system, concentrating more on outcomes. This will not be easy. Value is not easily defined. But we will work with patients, and we will work with clinicians, and we will work with industry and charities, to define what the incentives will be. 

The fact is, innovation is booming.

Regional Innovation Funds generated nearly 2,000 applications this year, with productivity measurements suggesting projects achieving returns on investments of between 60 and 2600%.

A recent independent study from the Kings Fund and Innovation Unit reported that innovation now seen as ‘core business’ for the NHS, specifically at board level.

And of course there are the Expos. Expo 2009 was a great success and Expo 2011 in March will be even bigger and better.


And yet there is still more we can do.

Recently, the UK has gained something of an unwanted reputation as the regulatory capital of the world. A reputation for complexity. For inconsistency. For convolution.

It is unacceptable to me and to the coalition that research in this country could be hindered by form-filling and box-ticking.

We have asked the Academy of Medical Sciences to conduct an independent review of the regulation and governance of medical research.  It will report soon. 

When it does, we will look at the legislation and bureaucracy that affects medical research and radically simplify it.  To allow you, the researchers, the freedom from paperwork that will best support our shared goals.

We are considering a national research regulator and expect the Academy’s working group to make detailed recommendations about that.

We also want to reduce the regulatory burden that charities face when they engage in research.  The National Research Ethics Service and the National Institute for Health Research have already made some headway in harmonising different processes.  I want to thank them what they have done.


This Government values the input of charities in medical research. It creates jobs, it shares knowledge and it ensures patients receive access to the highest-quality treatment, preventative care and outcomes.

We are committed to a future in which research continues as a core function of the NHS. This commitment is written down in the White Paper, where everyone can see it.

My department already works closely with your organisations. I look forward to that relationship continuing and developing to achieve what is our joint aim – to have health outcomes as good as any in the world.

Thank you.

Briefings on the impact on science of a cap non-EU migrants, data protection etc

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.

Science at the Conservative Party Conference – notes from a large fringe

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.

Science at the Conservative Party Conference – avoiding the herd mentality

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

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

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

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

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

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

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

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

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

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

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

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

Science at the Conservative Party Conference

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.

Science's reputation will be easily cracked, and will never mend well

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.

Coming down to earth – regulators, dementia taxes, collaboration and new generation politics

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.

Science at Labour Party Conference – Vital Signs

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

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

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

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

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

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

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

David Lammy MP

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

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

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

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