Cancer Research UK does not have all the answers..and that’s an invitation to the rest of us

I see that Cancer Research UK last week put out a press statement about the need for the UK to have strategic vision for medical research. You can find further details on their blog and they also issued a document entitled ‘Building the Right Environment for Medical Research.’

Thoughtfully the announcement and document have been sensibly timed so that you and I can carry it under our arms during the party conference season now upon us. All with the aim of stimulating debate in the run up to the Government consulting on and producing a research and innovation strategy. And how overdue is that particular gem I ask you?

‘Building the Right Environment’ is a curious document. It might seem strange but the main thought I had after reading it is that it would be hard to disagree with any of it. Is that because it it’s smack on the mark in terms of its prescription, or not challenging enough?  Discuss.

When I jotted down my initial reactions this is what I came up with, warts and all:

  • The conclusions are based on interviews with thirty or so Cancer Research UK scientists so, naturally, it reflects the priorities of that community. Nothing wrong in that and many of them are common to us all across science. But if you’re fighting for a rarer cause then your concerns are probably a bit more ‘fund’-amental. 
  •  Other partners involved in research such as patients might have an alternative but helpful perspective.
  • The recommendations are all good but quite specific and tactical. Each has a strategic role to play but it would be good to have  seen something in it to say how it might all hang together in terms of a coherent vision for UK medical research.
  • It misses some of the big stuff. To take clinical research for instance it rightly talks about the new Health Research Authority but there are other tussles that need addressing to get us further – how to integrate all the parts of NIHR into one system for instance, or how to engage the public in such a way as to drive up participation in and recruitment to trials. This is the additional stuff that is going to weigh us down.
  • I would like to have seen it pose some strategic questions for debate rather than simply proposing answers to a much-spoken about but ill-defined problem. What are the main challenges to how we do things now and is our model sustainable in the long-term? Again, things like clinical trials networks are well-embedded in the world of cancer but have some way to go in other fields.  How do we get there…quickly?
  • It doesn’t really look at the relative role played by different research funders and how this might be thought through – together – so we are more strategic as a community. Should charities be clustering around disease areas for instance in the way that we have therapeutic clusters developing between academics and industry (that’s off the top of my head)?

I just throw this out there.  As I am sure they would readily admit, Cancer Research UK does not have all the answers to our woes and that’s an open invitation to the rest of us.  So, if this document gets us to think a little deeper and debate more then that has to be a good thing.   

In that spirit I welcome it just as others have.  But I can’t quite get rid of a nagging feeling that it would have been great if it had gone just that little bit further.

International clinical trials day and a bit of mopping-up

It is International Clinical Trials Day today and The Cochrane Library has worked with the UK Medical Research Council’s Network of Hubs for Trials Methodology Research to produce a set of new podcasts about clinical trials – well worth a listen.

There was a conference in Vienna this morning organised by the European Clinical Research Infrastructure Network (ECRIN) (Yes, you’ve missed that), and it is perhaps worth reminding everyone that there is an excellent information leaflet and booklet on clinical trials that was produced by the UK Clinical Research Collaboration (UKCRC) some years ago with AMRC’s help.

Some local research centres are also doing special awareness days to highlight their work – for instance, this one in Bath.  And I thought this was a rather nice milestone being reported by the Leeds Cancer Research UK Centre to mark the day – it has recruited 2,000 patients to trials in its first year of operation. 

And if, like me, you intend to hold a roundtable debate with your family this evening about the way forward for the clinical trial you might wish to use this as fodder.

Yesterday while I was at the INVOLVE meeting saying goodbye to its current Chair, Sir Nick Partridge, Mike Rawlins (Chair of the Academy of Medical Science’s Review of Research Regulation), John Bell (President of the Academy) and Mark Walport (Director of the Wellcome Trust) were giving a press briefing on their concerns about the impact of the Health and Social Care Bill.  Mark Walport was on The Today programme this morning

But if you are in danger of going to sleep, have a look at Anaesthesia UK and read the comments made in a speech by Professor Michael Rees, Co-Chair of the BMA’s Medical Academic Staff Committee, about how the NHS reforms are the latest in a long line of recent develops which now threaten to destablise ‘medical academia.’ 

The Today programme reported that the Department of Health had issued a statement saying the Wellcome Trust’s fears were unfounded.  I doubt that very much indeed.  Anyway, we’ll be going at the issue again in a week or so with some added oomph.

Finally, my deepest apologies to Y-Touring for not getting to their special film showing of ‘Mind the Gap.‘  I was mopping-up loose ends and frayed strands.

UKCMRI Task Gets Bigger

So the UKCMRI partners were in front of the House of Commons Science and Technology Committee yesterday as were representatives of the local community.  Meanwhile the Science Minister, David Willetts, announced that the Government had agreed the business plan for the new centre as put forward by the Medical Research Council (MRC).   A good day all in all for the Centre and its supporters.

Interestingly UKCMRI is mentioned in two diagnostic articles looking back at last week’s announcement by Pfizer.  The first is by Andrew Jack in the Financial Times.  The second is by Colin Macilwein in NatureNews.   Each piece has a different accent with the latter taking a slightly more critical stance as regards the relationship between Government and pharma.  But there are also themes common to both around the need to reduce regulation and for better data sharing by companies.

I suppose Pfizer’s Sandwich plant  and UKCMRI are both of their time and I thought David Cooksey’s (Chair, UKCMRI) take on how UKCMRI will differ from what has gone before in the way it will cluster capabilities and knowledge was quite helpful to understanding why UKCMRI is so important to UK science.  

There was a lot of talk about the science ‘ecosystem’ at the time of the Spending Review and the need for the Government to avoid breaking it by not thinking through the consequences of its actions.  That’s the real issue about Pfizer and Sandwich, that together with other pharma cuts over the last few years, the UK has lost a significant amount of its pharma R&D capacity and capability with major knock-on effects for all including medical research charities. 

Against that background, initiatives such as UKCMRI take on even greater importance but the Government needs to think more strategically if we are to better manage the ecosystem going forward.  A TaskForce in Sandwich is important to managing the impact on the local community but we could do with a national Task Force as well.  One can only load so much onto UKCMRI.

And..finally from the sector…my congratulations to Alzheimer’s Research Trust who changed their name to Alzheimer’s Research UK yesterday and have a new website to boot.

Making the EU work better for research charities

On the face of it you might think this a very Friday afternoon sort of article.  But, as a discussion of how European foundations operate in a research funding context, it is is extremely interesting. 

The news peg for it is that plans are afoot by the European Commission to present a regulation for a European Foundation Statute by the end of 2011.  Very simply the Statute would make it easier for foundations and charities to operate across the EU including raising funds.  The idea has been in the works for some time and there is a public consultation open until February 28th.  See the European Foundation Centre website for more information – they also have a very active research forum.

I am not that keen on the European Commission’s pitch that this would enable charities to fill the gaps left by cuts in public expenditure on research by EU Governments (remember that argument from the spending review?).  Nonetheless the idea of enabling charities to generate greater funds is to be supported.

You may be interested to know that AMRC has been successful in getting an ESRC internship this Spring to look at NGO activities in support of medical research across the UK – as a comparative study but also to help direct our efforts to build cross-border alliances.  Currently our strongest links are with equivalent organisations in the US, Canada and Eire.  I am certain we could play an important role in marshalling voices across Europe in the same way as happens among disease-specific patient communities.  And Genetic Alliance UK is well-known for its work in this arena.

Towards a European AMRC, that’s what I say.

Health and Social Care Bill Published

After days of incessant pounding by critics and opponents the Government brushed itself down today and published its Health and Social Care Bill.  The text of the legislation can be found on the parliament website.

It is a titanic Bill – 353 pages, 137 clauses, 22 schedules long – and the vagaries of our parliamentary system will likely mean that some parts will not get so much as a nod and a wink.  Indeed, so vast are the changes afoot that the Department of Health has set up a new channel to help us all find our way around the reforms (not sure if it’s on Virgin Media yet).

However, a visit to the House of Lords today, understandably flush after their all-nighter this week, suggested that they are in no mood to let anything go through without significant challenge and a good deal of probing.  But they will need some help for sure, legislation is often more like a surrealist painting than cutaway drawing – the closer you get, the less you see. 

A quick flick through from a medical research standpoint suggests people might want to look at Clauses 13H and 13I and associated schedules which place a duty on the NHS Commissioning Board to promote innovation and research.

Good luck with it!  More later.

Getting touchy over the information revolution

Over the holidays I caught a BBC Radio 4 item about the days of the touch typist.  It was one of those gems of broadcasting which looked through a narrow lens to tell the listener much about how the world has changed.  It also brought back many memories of my time as a messenger at the old Department of Education delivering brown envelopes – many of them with a red flag meaning it was from the Minister’s office – to the typing pool.  About the same time my Dad (who was a schools inspector) got one of the first computers which sat in the corner of his office at the DofE in Arthur C Clarke fashion.  Indeed, I am not too sure who was more afraid of it – him or me.

Since then there has been an ‘information revolution’ of course,  And it just so happens that this is the title of the Department of Health consultation about information use and access in the health service to which AMRC has responded today .  We have made the following key points:

  • Research is central to the information revolution’s aspiration of delivering broad benefits to patients and society through improving access to information.
  • We welcome the government’s ambition that by 2015 “The quality and scope of information available for analysis and research will be considerably higher, more comprehensive and based on accurate recording.” and urge the government to work with us to ensure the information revolution can deliver this
  • Confidentiality and security must be central to the revolution to underpin patient support for the use of their data
  • Issues around the use of identifiable patient information in research must be addressed.
  • We urge that the recommendations of the Data Sharing Review and the ongoing work of the Research Capability Programme and Health Research Support Service be included in this strategy.
  • More focus is needed on informing patients to understand how their data will be used and supporting them to find out about research opportunities open to them.

The truth of the matteris that good information useage and good communication rely on sound leadership from the top – in this case Ministers. 

As we finalised our response this week, the irony was not lost on me that the Department should be seeking views on this issue shortly after a Christmas period in which it was roundly criticised for not pursuing a public information campaign on flu vaccination.  Why is it that, in this information age, all Governments wantonly cut back on communications, marketing and information activities?  Ultimatelyit can only short-change patients. 

I sometimes think that when politicians become Ministers they forget that they have become heads of ‘corporate’ beings.  Good communications is vital to whatever service their Department is delivering.  They neglect it at their peril  – a lesson learnt by most businesses long ago. 

For those wanting to get a grasp of some of the issues around the NHS White Paper ‘Equity and Excellence: Liberating the NHS’ of which the ‘Information Revolution’ is just one aspect, I encourage you to read yesterday’s House of Lords debate.  What would we do without the Upper House I ask myself?

It being the end of the week I should perhaps mention several other interesting bits of news from the last five days…

First, the data sharing agreement announced by the Wellcome Trust and other research funders.

Second, a union of national importance on the scale of William and Kate it may not be, but this week the Association of British Healthcare Industries (ABHI), Association of British Pharmaceutical Industries (ABPI), BioIndustry Association and British In Vitro Diagnostics Association (BIVDA) announced the formation of LifeSciences UK to facilitate joint-working between different parts of the healthcare industry and strengthen their voice with Government.  

And, third, this item about Cancer Research UK setting up a c-team of experts composed of four world-class research groups to launch a new blitz on cancer by targeting rogue stem cells that cause tumours to spread and become untreatable.

That’s it this week from the A-team.

Science budget: where will the money go?

If you are looking for the detail of today’s announcement by the Department for Business, Innovation and Skills (BIS) on the science budget allocations for the spending review period then please look at the excellent summary by our policy and public affairs manager, Becky Purvis, here.

Further perspective from me in due course.  But, given Breast Cancer Campaign’s letter on CRSF last week and our ongoing campaign on this issue, I am very pleased about the Government’s guideline to HEFCE that they allocate research funding to universities with the aim of protecting funding from external sources including that from medical research charities.  We’ll know more in the New Year.