Guardian

Or should that be silly pharma…I don’t know.

Yes, our colleagues from pharma have stolen the march on everyone else and got the silly season off to a grand old start.

I am referring, of course, to the leaked memo from the European and American pharma trade associations dutifully covered by Ian Semple at The Guardian on Monday. The memo lays out a strategy for heading off the campaign for greater transparency in clinical trials data (as successfully spearheaded by AllTrials) which includes getting patient groups to front the pharma counter-offensive. Article here: http://m.guardian.co.uk/business/2013/jul/21/big-pharma-secret-drugs-trials

You know there are all sorts of things that occur to me when I read these sorts of reports. In no particular order:

  • It reads like the sort of technically brilliant but politically stupid thing I might have written as a lobbyist (yes, sadly, I was one of those) twenty years ago.
  • I seem to remember that the MP who I worked for even longer ago than that, refused to take any call or read any letter written by someone fronting-up a campaign or cause on behalf of another.  ‘If they can’t speak to me direct then…’ he would say. Perhaps if more legislators took that line today we would see a rapid change in the practices of our lobbying industry – way beyond that which a register or legislation is likely to achieve.
  • Back to pharma and patient groups. Some of the latter such as the National Voices umbrella group of charities and voluntary organisations have been quick off the mark to condemn the memo and its implication that they can be bought. Others have been less so. I hope those in the latter camp do come out soon and distance themselves.  Yet I fear some patient groups are simply becoming more conservative by the day and, at this very moment in time, are spinning round in a quandry as to what they should do, evaluating all the possible things that could go wrong for them depending on their decision.  A bit like ‘Scoop’ in ‘Bob the Builder.’ What’s that about moral compass I hear you say?
  • I didn’t used to think this but I can feel myself moving to a position where I believe there should be a ban on charities receiving pharma funding.  Failing thatimum, they should be legally required to declare all monies received and the purpose. Otherwise some day a charity – and form suggests it’s likely to be the good but misguided rather than the rampantly criminal – is going to come a real cropper.
  • The best thing that the UK’s own pharma trade association, the ABPI, could do is openly say the memo is not something it subscribes too. Or somehow let it be known that its silence is a signal of utter disdain.
  • It is ironic that a sector which has pilloried the European Union for the last ten years for making research harder to do, should suddenly find solace in its tendency for delay and obfuscation.

But the really, really silly thing is that anyone could seriously take a position that transparency is bad for research and bad for patients.

As I update this in the evening it is only right and proper to point out that the associations referred to in this blog – EFPIA and PhRMA – have today issued their proposed principles for Clinical Trial Data Sharing.  Lots of coded language in there I think you will find….

You didn’t think I’d forget NIHR Friday did you?

So the National Institute for Health Research Clinical Research Networks Co-ordinating Centre (NIHR CRN CC), together with The Guardian online, has this week published its annual performance tables for research activity in each NHS Trust in England for 2012/13.

You can find the figures for your local NHS Trust here. For each Trust data is provided on the number of clinical research studies recruiting during the year, along with the overall number of patients recruited into all studies.  Comparative figures are provided for 2011/12 so you can see whether activity has increased or not where you live.

Overall the news is very good indeed.  More than 630,000 people were recruited into clinical research studies.  That’s a 7% increase on the year before.  During the year NIHR CRN supported more than 4,200 studies and that’s a 12% increase on 2011/12.  There are some nice, simple summary reports available through the NIHR CRN CC website here (look for the pdfs at the end of the page).

A good year then.  But it can get better.  Hence the importance of the ‘Ok to ask’ International Clinical Trials Day (ICTD) campaign this year.

This week I was fortunate to see the early feedback and results from the campaign (in fact some of them are in my Leeds presentation which I posted yesterday).  There is much to celebrate.  You can be sure we will be continuing with the theme and perhaps we need to join-up the performance stats and the ‘Ok to ask’ activity in some way?  How about a ‘Rapid Reaction Ok to Ask’ taskforce to focus on the areas where we need to do most work?

Have a good weekend.

20130507-073902.jpg

 

Just thought I would pass on these two pieces by Candy Morris, Research Champion for the NHS, and Mike Farrar, CEO of the NHS Confederation, respectively, about the importance of public involvement in the NHS.

Candy’s article appears in the Department of Health’s regular bulletin ‘The Month,’ and focuses on public involvement in clinical research. The link seems to be a little unreliable but keep trying as it is a good read.  Mike’s article in The Guardian looks at public involvement in the wider NHS and he rehearses some favoured themes of his, not least the need for greater openness and transparency.

It is good to see two leaders who I very much respect put their views on public involvement in writing.  Their commitment has been reflected in the organisations they have run.  Last week a colleague from the NHS Confederation was telling me that they are looking to do a lot more work in this area and that would have been unthinkable not so long ago.  It has also been noticeable since Mike – he of the NW Exemplar of course -took over at the ‘Confed’ how much more it has done to focus on research issues.

We need more of this from others.

I’m pondering writing a piece in the next day or so sharing some worries I have about learning and development in PPI, particularly the seense I have that we are paying little atention to helping develop the public involvement leaders and colleagues of the future.  Would welcome comments and thoughts while I put the piece together.

So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week.  Not that I’m a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below).  To think I used to spend three weeks every autumn to attend the party conferences.  It’s like regaining a bit of my life again.

But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2’ website (this is the review looking at information governance in the NHS including use of patient data for research purposes).  Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work.  Look under the Southern Informatics listing on this page.

I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS.  I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients.  I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter.  Let me worry about that one.

I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline).  The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all.  It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.

The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate.  Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week.  It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’  Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute.  I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.

Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website.  Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs.  Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.

This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials.  It is being developed by DeNDRoN and will be developed shortly.  This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s.  The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.

Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places.  Reminds me I must buy Ben Goldacre’s new book to read on my travels.  And this from the US Federal Drugs Administration today seemed relevant.

In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question:  ‘Who is fighting the patient’s corner?’

He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients.  A thick, muddy, layer of ineffectiveness which will be, at best, no worse than the previous one.  Funny how, in the face of it, we have become all dewy-eyed at the distant memory of the much-maligned Community Health Councils (CHCs).

Anyway, it sounds like one of those conferences I was pleased I missed in the end even though I was booked to attend.  Not least because I didn’t then have to listen to Stephen Bubb’s new-found ‘expertise,’ as reported by Dick Vinegar, on who funds the most medical research in the UK.  Quite alarming.

Watching the daily traffic on twitter from this conference or that conference, much of it laden in the latest buzzwords, I sometimes wonder whether we are indeed living in a parallel universe to the public.  In fact I suspect Dick speaks for most of the nation when, with refreshing honesty, he admits his lack of knowledge about some of the ancestors of Healthwatch.  I guess that even those that can, would then have difficulty describing what they do or what they have done.  The portents are not good for the latest round either.

On the other hand it is easy to overlook the impact that patient advocacy has had in recent decades and rather opportunely I noticed that PatientView have brought out an interesting report looking at the influence of patient groups in the UK and around the world.  Discuss!

But I do fear that we are at times in danger of creating an industry that reflects the interests of its managers and owners, rather than the social movement – a group of people with a common ideology who try together to achieve certain general goals – that I hear many people aspire too.  Form and function have taken precedence over aim and purpose.  What is missing it seems to me is a complete lack of thought about how, looking beyond the new structures, we ‘get out there’ and mobilise public interest and participation.  Hence many good colleagues will find their way to the table to find that their feelings of isolation are not much different to the ones they had in the old world. They will plough a lonely furrow and the yields will be poorer for it.

Last week I had the good fortune to share some time with two colleagues who have both been around a bit and know their stuff on public involvement.  I was expressing my worries about how obsessed people are currently about structures, definitions and processes.  We work long and hard to create these things and then wonder why the public pass it by.  I asked whether this had always been the case – particularly with regard to public involvement in research – and whether people had been paralysed with an overriding need to cross all the t’s and dot all the i’s .  The answer was refeshing:  ‘No, we just got in there.’  Anywhere, in fact.  The philosophy being to seize on any opportunity that could help make change happen.  And it did.

‘Get out there, get in there’ sounds like a perfectly reasonable call to action to me.

 

 

The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12.  Some of the data and a good summary of what they mean is also available on The Guardian website.

Last year was the first that this sort of information was made widely available.  So importantly, from a public perspective, people can now look at how their NHS Trust has improved upon what it did the previous year.

The overall picture is positive.  In addition, there are some very good stories within the report about the progress being made in specific parts of the system.  I am particularly pleased to see the increase in research activity across primary care – a significant foothold that we must make sure is built upon as the NHS changes take effect.

Patient recruitment to research was above the NIHR CRN CC target, if a little lower than last year.  It simply emphasises the fact that we have much to do to ensure patients are given the opportunity to take part in an appropriate trial.  More importantly, that they know they have the right to ask.  I shall say more about this next week.  The fact that the NIHR CRN CC report slices up the data by NHR Trust and type of Trust also means we can be quite strategic in our thinking about where this push is needed most.

Yesterday I chaired the second meeting of a working group – hosted by NIHR CRN CC – that will be bringing together a cluster of public involvement colleagues in NHS Trusts across the country to develop tools and information for Trusts to improve access to research for trials.  You heard it here first.

We are on the right path.