I hope you have had a good Easter weekend.

There have been three health research stories in the last week that have caught my attention.  Each story is significant in its own right.  But they also share a common theme around the importance of public participation in research.

First up is the research published by King’s College London in the American Journal of Psychiatry looking at the long-term effects of childhood bullying,  It uses data from the British National Child Development Study  funded by the Economic and Social Research Council (ESRC) to show that the detrimental effects of bullying last well into middle age.  The participants in the study are 17000+ individuals who were born in one week in 1958 and have been followed over time.

I noted that someone posted a comment on a news site saying ‘why the research, isn’t it obvious?’  Maybe.

But as someone whose adult life has been coloured by what happened all those years ago at secondary school, I am delighted that they have opened up the discussion about this important issue using such strong evidence.  Also, to see so many voices comment on the need to step up preventative work in our schools, communities and online.

It proves the importance of this sort of birth cohort study to understanding more about health and well-being and how it changes over the decades.  The point yet to prove in this case is how to turn such evidence into practical interventions.  Anyway, call it bias, but I happen to think it deserves billing over my next chosen story.

This is the news that Cancer Research UK, Astra Zeneca, Pfizer are moving to the next phase of their Stratified Medicines Programme started in 2011 which involves screening all lung cancer patients for genetic markers to determine which of as many as 14 different new drugs might help. It’s called the National Lung Matrix Trial in what sounds like a Hollywood blockbuster.

This is far-removed from how pharma companies used to work; searching for blockbuster drugs in the manner of someone looking for the Holy Grail.  The partners are looking to test sharper, more precise instruments.  The trials are more complex and often involve fewer participants.  The collaboration is wider and more collegiate.  Where it has a point to prove is in the extent to which the NHS is fit-for-purpose to make this sort of trial work not just in cancer but in other diseases too.

That’s also the point of the third story I wanted to highlight.  Every year, ahead of its annual dinner, the Association of British Pharmaceutical Industries (ABPI) publishes some sort of (frankly unreadable) report about what it believes is the dismal state of UK research.  To be fair, its report this year – ‘Mind the Gap’ – about the state of readiness in the UK to develop ‘personalised medicines’ is a bit more interesting and balanced than usual.

But why do I sense some sort of whispered, almost pitying voice reading the words when it comes to the sections noting the on-going difficulties in recruiting people to clinical trials.  But also the complete absence of thought or consideration to patients and the public as possible partners in devising solutions, not least by involving them in research design and delivery.  As had been shown time and again across our clinical research networks.  It’s the perennial blind-spot for industry.

They have much still to prove.





On my recent visit to Newcastle, my afternoon was spent talking to, and answering questions from, the public about research.  Clinical trials featured heavily.  The most common theme was their frustration over the poor quality information given to trial participants before, during and after a trial had finished.

The journal, PloS ONE, has today published a study by researchers from the University of Southampton (UK),  Harvard Medical School and Northern Arizona University (US) in which they conclude that the information given to trial participants about ‘placebos’ is often incomplete and inaccurate.  In their study they looked at 45 trial leaflets for participants.  They go so far as to suggest that the poor nature of the information provided undermines the principle of ‘informed consent.’  (Medical News Today also cover it here).

Whether it is cock-up or conspiracy that researchers fail to do this I don’t know.  But this sort of stuff really gets to me.  Why isn’t this stuff being picked-up in the trial design at the time of ethics approval? Why does it seem so difficult to get such simple things right?  Why does it need another ‘test’ or ‘trial’ to put it into practice?

The broader issue it points too is the need to codify the rights – and responsibilities! – of trial participants.  I can feel a letter brewing to the HRA.  Hence my headline.

This was reported last week in the US press but I have not seen it covered here in the UK.

Pfizer has reeled-in its social media strategy for recruiting patients to a US clinical trial of over-active bladder drug, Detrol.  But it hopes to come back next year with a renewed ‘virtual trial strategy.’ In the meantime it continues to use social media in conjunction with traditional methods of patient recruitment.

Posting because it just goes to prove we are all still learning when it comes to social media…..


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.

Tomorrow is Budget day.  Having just finished AMRC’s own budget and business plan for 2011-2012 all I can say is: George you know where I am if you want to crunch some last minute numbers?

The Financial Times is reporting today that the Chancellor of the Exchequer will announce a £100million cash injection for capital projects to ameliorate the effects on science of cut-backs announced by Pfizer and Novartis since the beginning of the year. 

Since the political message in the last few weeks has been about ‘reform’ I wonder whether we might also see some movement on the research regulation front.  Not a great deal since the word is it will take years rather than months to disassemble the current system before putting in back along the lines suggested by the Academy of Medical Sciences in its report earlier this year.  But something that suggests the Government is committed to speeding up the system and encouraging growth in the sector.  And if they don’t, then it will be a salutory lesson that given a choice between an octopus and myself to make predictions, always go for the octupus. 

Anyway, we shall be posting all the news from the budget here and on Becky’s fantastic policy blog – but visit here first please just so my stats are better than hers.

In other news, you may wish to look at AMRC’s submission to the House of Commons Science and Technology Select Committee inquiry into peer review published today.  As I have said many times before, the UK has a good story to tell on the commitment of research charities to using peer review to allocate their research funding.  Other written evidence submitted to the inquiry can be viewed on the committee’s website.

Plus, I should make mention of the final AMRC/UK National Stem Cell Network public engagement meeting – this time in York on 29th March 2011.  The event will feature the screening of the award winning film ‘Indestructible’ which documents the declining health of a young American motor neurone disease sufferer, including his trip to China for a stem cell therapy.  The film will be followed by a question and answer session with a panel of local experts.

Finally, a soft launch of an exciting new project that AMRC, together with the British Library, UKOLN at the University of Bath, Sage Bionetworks and the Digital Curation Centre and funded by JISC, will be undertaking over the next few months to investigate the potential of crowd- sourced “lay summaries”, derived from UK PubMed Central content, to enable the citizen- patient to better understand research.  The project now has its very own blog which will be populated with a great deal more information very, very soon.

As CEO of a membership association I am used to crowd-surfing.  So this is a new one on me and all the more exciting because of it.

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.