‘Scroll down’ for clinical trials

To begin with, here’s more on that Pfizer story about use of mobile phone technology etc in clinical trials. It seems to have piqued an interest among many of you anyway.

Also on the subject of clinical trials, I was rather perplexed by this story running out of the NHS Confederation this morning. I’m delighted that the NHS Confederation are at last exercising their PR might in the name of research – it must have something to do with Mike Farrer’s move there as CEO. As you may know, he was previously the chief executive at the North West Strategic Health Authority which led the hallowed ‘NW Exemplar work on clinical trials.

The overall message of the piece about regulation standing in the way of clinical trials is also good. But I am sure the data/evidence they have put forward to support it, passed its sell-by-date a long time ago. If you look at the latest metrics for trials put out by the NIHR Clinical Research Network (CRN) Co-ordinating Centre, one gets an alternative and more up-to-date picture of an improving situation.

Much work is still to be done though.

The really striking bit in yesterday’s MORI survey by the Association of Medical Research Charities (AMRC) was that showing the degree to which patients would be willing to assist in research by participating in trials (72%) or letting researchers access their confidential records (80%). But you have to scroll down the page to see these results.

A bit like we expect patients to ask their GPs to do if they want to turn their willingness to take part in research into action. I am sure I saw an academic paper a few weeks ago which heralded the 39% or equivalent GP practices that were active in recruiting patients for trials in Eastern England. All I could think of was…what about those people living in the catchment areas of the other 61%. Perhaps their GPs still use scrolls instead of prescriptions.

So grist to our mill in making sure the Health and Social Care Bill supports the things that are already being done by NIHR and others to change this.

Flying in the face of an interregnum

As a self-confessed member of the worried well, I ask that people think carefully before they throw strange words at me.  Particularly on the day of a regular visit to my ‘prescription-happy’ doctor.

A colleague asked me this morning how my interregnum was going.  It  sent me into a momentary panic.  Is it treatable I wondered anxiously?  Then I asked myself if I’d been asleep longer than I thought during which time there had been an overnight interregnum akin to other moments in history such as the Spanish Inquisition.

Finally I realised she was referring to my being between two jobs – I start at Ovarian Cancer Action on Monday.  Phew.

The final days of the Department of Health’s listening exercise have seen a last minute flurry of submissions.  I read on BBC News Online that over 15,000 comments have been made and 750 letters received by some poor official who only three months ago had an empty in-tray. The Association of Medical Research Charities’ (AMRC) submission on behalf of the charity sector can be found here - and very good it is too.  Elsewhere the King’s Fund has kept up its usual pace of incisive criticism with a report on accountability in the proposed new NHS set-up.

Indeed, accountability is a theme that has resonated strongly in these final days.  Mark Walport, Director of the Wellcome Trust, referred to it in his Times article yesterday.  The Daily Telegraph reports this morning that the inclusion of patients and the public in the management boards overseeing GP consortia, is likely to be one of the key recommendations that the NHS Future Forum chaired by Steve Field will make when it reports to the Cabinet shortly.

That has to be right.  There seems to be an inherent contradiction between Big Society politics and the NHS reforms if the public are not to be given greater access and opportunity to influence and shape how health care is delivered in their neighbourhood.  Of course, that’s always assuming you believe in the Big Society mantra.

But I do understand the difficulties for the Government in getting the composition of these bodies right given the equally understandable clamour from all and sundry to be represented.  I see the nurses are the latest to make their pitch today.  However, patient and public representation should be one of those ‘red lines’ for charities and the voluntary sector on which we should not give way in the months ahead.

If you are planning a holiday around developments with the NHS reforms then you may wish to take a look at the Financial Times article today which speculates about the timetable from here onwards.

Not long now before we’ll find out how much of its original plans the Government decides to alter or whether it is intent on flying in the face of its own self-imposed interregnum. 

Footnote:  By the way, I heard an interesting bit of ‘Whitehall’ news last week which is that the Office for the Strategic Co-ordination for Health Research (OSCHR) has moved offices from its HM Treasury base (its home for the last few years) and is now located in the Department of Health.  Happy to be corrected if I am wrong.

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.

Department of Health about to have a Field day taking calls, I believe.

The NHS seems to be dominating my life this week.  Quite apart from the news headlines, it has involved two visits to the doctors and a blood test so far ..but I am on the mend I am pleased to report.  All I can say is, a 45 minute wait for a blood test and excellent advice from my GP surgery receptionist (the real power in the NHS as you all know) leads me as usual to a personal conclusion about how good the service is.  The conundrum is why we are all so easily convinced that it is not by the time we get home.

In the meantime, as you know, I have a blue and yellow phone in my lounge.  This is so I can take direct calls from the Coalition Government Ministerial team at the Department of Health about pressing issues of state (and, yes, I have a red phone as well before people accuse me of bias!).  Now that ‘The Killing’ is over I have found I have more time than ever to provide wise counsel.

So I was pleased that my suggestion of a summit (mentioned in this blog a few days ago) has been so speedily (part) adopted as reported in the FT online this afternoon. It says that a number of ‘expert panels’ will look at the reforms with a fresh eye.  But can anyone tell me why there isn’t one on research?  Perhaps the phone went out at that moment in the call, I can not remember.  Anyway, the Department of Health news release is here.  The whole exercise is being called the NHS Future Forum and is going to be Chaired by Birmingham GP, Steve Field.

Looking at the strands, I absoluteoly get the first three.  However, the fourth (about health professionals advice influencing patient care) seemed a little thin although it is hard to tell fully without seeing the terms of reference. 

So I was going to call the Department when I realised that, as it was set-up some months ago, I can only take incoming calls from them.  I’ll let you know when it can make outgoing calls as well as part of the new Department listening exercise.

NHS reforms, research and 'localism'

I really would encourage you to read this morning’s article in The Guardian about the impact of the NHS reforms on doctor  expertise and research.  Its the first article that I’ve seen thus far which really conveys the message about health research that AMRC has been trying to put across and on which we anticipate stepping up our activity as the Health and Social Care Bill heads into the Lords.

It also feels like a significant piece because of the intervention of the President of the Royal College of Physicians, Sir Richard Thompson.  This is the profession’s voice as opposed to the ‘union’ voice as articulated by the British Medical Association (BMA).

At our Science Communication Awards on Tuesday night I got into quite an interesting conversation with some of our guests about the possible implications for research of an NHS reform package which is essentially as much about greater ‘localism’ as it is about establishing a regulated market.

One of the perennial concerns that AMRC often has to deal with is that of small local charities raising money for research taking place at their local hospital or by a doctor who perhaps cared for a loved-one.  It is not the raising of funds that is necessarily the problem.  Indeed, it is important that we do not deter such local passion and conviction.  No, it is the fact that such money is being raised and then distributed in a parochial way; that such local charities very rarely use independent external review (peer review) to ensure they are funding the best science.

That is why - knowing also that administering peer review is not easy or without associated costs – we try our hardest to encourage such organisations to buddy-up with other charities that do have such systems in place or find some way of routing funds to research charities while retaining some sort of footprint on it.

Who is to say that in the new NHS, we might not see GP consortia actively encouraging such local charity connections in the name of ‘so-called research’ – superficially beneficial but in the long-term pretty disastrous.

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.