Lord Turnberg

March 2, 2011

Health and Social Care Bill and other reasons to switch-on

I begin with a public information announcement….If you are following the debate about the Health and Social Care Bill then you really must come to AMRC’s workshop on 29th March to discuss its impact on research and what’s to be done about it.

If it is anything like the All-Party Parliamentary Group on Medical Research dinner on 29th March then it will be well worth your while attending. Emma Greenwood from Cancer Research UK has done a quick write-up on the dinner and the ‘official’ record will follow in due course.

Yesterday I wrote about the HEFCE announcement on the weighting for ‘impact’ in the Research Excellence Framework (REF). I was pleased today when one of my sharp-eyed team (of which I have several hundred here as you know) noticed this workshop being run by the National Co-ordinating Centre for Public Engagement at the invitation of HEFCE.

It’s aim is to inform the the eventual guidance to universities on this part of the REF. If a side-product of REF is the development of public engagement into a more robust discipline it will be a good thing.

I see the Russell Group put out a statement yesterday saying 20% was still too much but The Guardian’s article probably gives the best overview of where the sentiments are across the research sector. As I say, personally, I think HEFCE has fallen in about the right place for this first go and I am sure we will learn a considerable amount from it.

And lastly, since I am still loosely on the subject of public engagement I wanted to highly commend an excellent report by NCVO which is out today. Entitled Participation: trends, facts and figures it gives an absorbing and detailed insight into public participation in civic society in the UK. Science is not mentioned but it will give those that believe the British have ‘switched-off’ something to think about.

January 19, 2011

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.

January 14, 2011

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.

November 4, 2010

'A nation of General Practitioners' and other bits of philosophising

The news earlier this week that the National Institute of Clinicial and Health Excellence (NICE) is to lose its powers for deciding which drugs should be made available on the NHS (to be replaced by a new system based around GP commissioning) brought an alternative version of Adam Smith’s remarks about shopkeepers to mind:

“To found a great empire for the sole purpose of meeting people’s health needs may at first sight appear a project fit only for a nation of general practioners. It is, however, a project altogether unfit for a nation of general practitioners; but extremely fit for a nation whose government is influenced by general practitioners.”

Adam Smith’s Health of Nations?

I am beginning to think I might re-train as a GP given that they are one of the few professions in favour with Ministers. In fact, keep going on like this and we may see the dawn of a whole new health aristocracy previously known as GPs – reluctant aristocrats at that I should add, if you believe recent polls (see The Guardian last week).

When the news about NICE broke it sparked a brief flurry of widely differing views (see Emma Baines in the London Review of Books or the Daily Mail) But it is interesting that the NICE story has died a death so very quickly. My sense is that it was probably stamped on pretty quickly by the Department of Health. But also because there is much more to the announcement than has been reported so far. Indeed, there is nothing worse for a Government than having others taste your half-cooked specialty dish. My tuppence worth in summary?

NICE is a much maligned organisation, but surely we are not intending to lose the skills and expertise that NICE has built up in terms of drug appraisal (plus an international reputation for excellence to boot) for nothing are we?
If we really are to move to some form of local prescribing then what safeguards will we see in place to stop the same shadow of inequity moving acorss the country much like the Ice Queen managed in Narnia.
Many of our members seemed to adopt the only sensible response which was one of cautious scepticism but with overriding concern for what it would mean for patients.

But finally….some us can recall the pre-NICE days of real postcode prescribing and healthcare provision. In fact I remember producing a report about the postcode lottery in NHS long-term care beds in 1993. What was staggering was not just the fact that the NHS had abandoned a whole form of care provision, but that health authorities behaved as if completely above the law and wouldn’t even respond to MPs letters asking how many beds had been closed etc.

In terms of further reflection you may wish to read Lord Turnberg’s exchange with the Minister Earl Howe yesterday in the House of Lords. In fact if you want to read an excellent summary of the issues for research raised by the NHS White Paper in general you may wish to read Les Turnberg’s speech in the parliamentary debate on health reforms on 28th October.

*****

Earlier this week AMRC and INVOLVE held a patient and public workshop on the regulation of medical and health research at the invitation of the Academy of Medical Sciences who are in the final stages of their independent review (see previous blogs on the subject). A truly engrossing event. My thanks to the attendees who sent us away with a strong message that we should rebrand the NHS the National Health and Research Service and carve it in stone above every hospital and surgery. We will be producing an independent report of the workshop in due course.

I suppose I am particularly proud of this latter piece of work because if you search for literature on public opinion about regulation there is very little that you can find. It is good to know that we will help to fill that void and I am sure that evidence gathering and data presentation both about research charities and about patients and research will be a strong theme of AMRC’s future.

Richard Smith (former BMJ editor) has written a very thought-provoking blog on the conflcits of interest experienced by journal editors.

For those who have been following the mid-term elections in the United States, Research!America has posted a short piece on its blog summarising the implications for science and research. I do like their pieces.

And finally on the AMRC front again, I am getting very excited about our impending office move (see photo of new office below – it doesn’t show my desk which will rise throne-like from the floor surrounded by dry ice each morning that I arrive for work) and our AGM on 24th November with Earl Howe, John Savill (CEO, MRC) and Nicola Dandridge (CEO, Universities UK) all confirmed speakers.

Lord Turnberg

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