Astra Zeneca

Some of the leading life sciences organisations in the UK have joined forces to issue a ‘statement of aspiration’ about the involvement of young people in research saying:

‘Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to the adult healthcare/life sciences research setting.’

The roll-call of organisations who have signed the statement includes three of the largest pharmaceutical companies in the world, the ABPI, Ethical Medicines Industry Group (EMIG), as well as the National Institute for Health Research (NIHR), Nuffield Council for Bioethics, and Health Research Authority (HRA).  Other signatories are as follows:

  • The Association of the British Pharmaceutical Industry (ABPI)
  • AstraZeneca
  • The Ethical Medicines Industry Group (EMIG)
  • GenerationR
  • GSK
  • The Health Research Authority (HRA)
  • The National Institute for Health Research (NIHR)
  • Proveca
  • Quintiles
  • Roche
  • UCB

The ground-breaking communique notes the importance of collaboration between researchers and the people whom research aims to benefit, and highlights how this is  distinct from ‘market research’ and ‘one-off’ approaches by a funder.  It emphasises the value that involving young people can have in particular, and notes the leadership that the UK has shown in developing this work.

The statement has its origins in the GenerationR conference – which took place at the Science Museum in 2013 – and subsequent report and recommendations which called for closer-working with industry.  Work since the conference has included the setting up of a GenerationR website and last autumn’s establishment of a GenerationR alliance to bring together organisations to further the work.  Not to mention initiatives by other organisations, most notably the Nuffield Council on Bioethics ‘Children in Research’ report.

The idea of a statement to be the basis of further action between the signatories was proposed at a roundtable meeting hosted by the Nuffield Council for Bioethics in April.  The full report of this meeting can be found here.

More background on the NIHR’s work with young people can be found here.

Further contact details can be found at the foot of the statement.


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.





Here is a gripping report from this week’s ‘Adweek’ (based in New York) about the new marketing strategies being used by pharmaceutical companies.

Don’t be put off by the reference to ‘Obamacare.’ The story is equally applicable to the United Kingdom.  For it is essentially a tale about how disease is being re-packaged. Patient data is the new currency, social and digital media the marketplace.  Companies are no longer selling potions and pills but offering an all-round ‘service’ to patients and health professionals.

The speed with which the private sector can move in this way is dizzying (I thought I was doing well this morning by getting someone to agree some terms of reference!).  The sums of money at their disposal, mind-boggling.  In fact, the implications of what is happening can feel overwhelming.  So much so that it is easy, all too easy, to put on one’s ‘Blockbuster’ voiceover just to up the threatening atmosphere.  Yet who isn’t chilled to the bone when a commentator can glibly say in print:

‘For years Lilly has owned diabetes.’

Has anyone told people with diabetes and their families this?

I am sure that many patient advocates will be worried by the scale and speed by which these new approaches are heading our way.  But we seem to be in a collective state of un-readiness for this latest chapter in the marketization of health or selling sickness.  Or are we just complicit?  Either way it makes the work of organisations such as ‘Selling Sickness’ or Sense about Science as well as advocates such as Margaret McCartney  who are calling attention to these trends, all the more important.

How will patients be able to source independent advice when the market is smothered by ‘Trojan horse websites’ or apps backed by pharmaceutical companies? How will they be able to identify truths amidst this morass? Can regulators realistically be expected ‘protect and promote’ the public interest in the digital age using the same carrot and stick approaches that have failed in the past?  We have barely begun to think through the consequences.  Let alone the solutions.  And yes, these have to involve the companies themselves.

The danger is that we continue with our obsessions about things like the best model for lay reviewing when such bigger changes are afoot; we can only stay entrenched in land wars about whether something is public involvement versus participation versus engagement for so long surely?  Let’s not allow ourselves to become so tamed within our own boundaries that we lose the art of thinking beyond them and tackling new challenges?  Otherwise it will all be over when we finally do wake up.

In the meantime, we should remember, there’s no such thing as a free app….

Ther’s a couple of good pieces in the FT (link will take you to the front page) about the Pfizer announcement yesterday.

Actually, it’s quite interesting reading the comments of Pfizer’s CEO as reported this morning.  They give some insight into the self-critical eye that pharma is taking on how it has done things in the past and how it needs to change.  Basic message:  ‘All the big (drug) bets are off.’

And it’s not all bad news on the Pfizer front as this news release from Cancer Research UK shows – their announcement about an initiative on stratified medicine which is receiving investment from Pfizer and Astra Zeneca.