‘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.

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.

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.

The NHS reforms and patients…and EU research shake-up?

Science fear not.  Those of you disappointed that the EU summit on 4th Feb only got round to the subject of ‘innovation’ at a late hour and to little discussion should take heart from the fact that patients have been used to being at the end of a conference/meeting agenda etc for most of the last century…

But perhaps not today…No doubt you will have noticed that eight charities had a letter published in The Times in what the BBC called the opening of a new front against the NHS reforms as embodied in the Health and Social Care Bill.  They express concern that the reforms will dilute patient involvement in the NHS.  Six of the charities are AMRC members.  The other two include the increasingly impressive umbrella body, National Voices (who also publish a copy of the letter), and the mental health charity, Rethink.

Meanwhile the Secretary of State for Health, Andrew Lansley, has written an article in The Guardian claiming that growing numbers of people are backing his reforms.  Game on as they say.

It is interesting how, in little more than a decade, we have gone from ‘patient choice’ and ideas around a patient-led health service (which served its purpose well in confronting entrenched attitudes) to talk of a health system which is ‘clinician-led.’  Or, more accurately, GP-led.   My members and other charities are right to warn about the degree to which patients are at risk of being distanced from GPs and health services under the plans for GP consortia. 

But back to that EU story.  The EU Commissioner for research, Márie Geoghegan-Quinn, was at the Royal Society yesterday speaking about future plans for EU research including a ‘clean-break’ from the Framework programme and confirming that an EU Chief Scientist Appointment would be made this year.  The green paper setting all this out is published tomorrow although whether Nature’s call for greater clarity is heeded remains to be seen.

Health and social care reforms on trial

What better starting point for today’s blog than the comments of two leading clinicians speaking about the importance of clinical trials to patient outcomes.  First, Dr Duncan Wheatley, a Clinical Oncologist and Lead for Research in the South West Peninsula, who is quoted in a BBC Cornwall story today about medical research at the Royal Cornwall Hospitals Trust as saying:

‘It makes a huge difference. Obviously we can’t guarantee that the new treatment will always be better than the old treatment, but patients who go into the study, even if they get the normal treatment, generally get slightly more intensive care.”

The story talks more specifically about how research has trebled there over the last three years with now over 300 studies underway and over 1400 patients involved.  It looks as though the Trust is in the process of building its research pages but I hope they follow-up the press coverage today with a bit of showcasing on the Trust home page as well.   I believe most of the research there takes place at the Knowledge Spa facility in Truro and that charity involvement occurs across a number of disease areas including MS and arthritis.

The second quote is from a little earlier in the month, this time from Prof David Newby who is NHS Lothian’s R&D Director.  In this Scotsman piece about NHS Lothian’s strategy to increase the number of non-commercial trials by a fifth he says: 

‘That’s why our research and development policies are so important. It provides major benefits for patients in our area.’

And today you may have seen the story about the breast cancer drug that migth be effective against lung cancer (more trials needed) or indeed this one about the £1 million funding being provided by Arthritis Research UK for a clinical trial in Birmingham to improve treatment for those with Sjorgen’s syndrome. 

It is the degree to which health and social reforms enable us to grow such research activity in England that they will be judged by the members of AMRC.  With the Academy’s report and recommendations on research regulation now out there and the results of the NW Exemplar Pilot published today I feel we might be close to having a finely-tuned engine for clincal trials.  

But it is the chassis  around us – namely the NHS and how it is run – that might now fall apart around us in Keystone Cops fashion.

And for those of you who remain unclear why medical research charities remain concerned about the impact of the NHS reforms, I encourage you to cast your eye over the appendix to the response we put in to the Department of Health’s ‘Information Revolution’ consultation two weeks ago. 

This summarises some focus group research (quoted in the Academy’s report) that we did into patient and GP attitudes to clinical research and use of patient data. The basic message coming out of it is that most GPs are simply not set-up to do, nor engaged with, research to the extent one would hope. 

So what’s one to do when presented with reforms that put GPs in the driving seat for how our health service is run? 

I hope that some of my concerns might be allayed by an NIHR seminar I am attending next week on embedding research in the new NHS.  In the meantime the scenario reminds me of a relative who bought a Range Rover with a diesel engine and decided to put a petrol engine in it.  To cut along story short, the vibrations were so bad that the chassis fell off.

Perhaps a clinical trial for how these reforms might best support research would be wise?  But, then again, Andrew Lansley is a man in a hurry.