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New science networks herald more fertile ground for health innovation

Welcome

Thanks for visiting my blog. I am Chair of INVOLVE - the UK's national advisory group on public involvement - and NIHR National Director for Public Participation and Engagement in Research. I was CEO at the Association of Medical Research Charities (AMRC) from 2006 until 2011. My full profile can be found on the 'Biography' page. The views on here are all personal ones unless otherwise stated. I hope you enjoy some of the things I write and/or find a useful link or two along the way.

If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations.

Herewith some new and some not so new ‘kids’ on the block in the world of research.

First, great to see that my good colleague and patient advocate, Derek Stewart, has started his own blog and has got off to a predictably brilliant and incisive start with a piece entitled: ‘What I want from research.’   I’ve also listed his site on my blog roll (see below).

The British Heart Foundation (BHF) has a new report out today entitled ‘Clear and Present Data.’   It examines how use of patient data is integral to medical research.  There’s a youtube video available through the above link and BHF have also published the results of a YouGov survey of public opinion on patient data issues.  Suffice to say that this is all part of a significant push by the medical research charity sector on patient data issues – it is, for instance the theme of AMRC’s parliamentary summer reception on 12th July.

The BHF report makes six recommendations including introducing an opt-out system for use of anonymised data in research (already a Government proposal subject to the outcome of a public consultation later this year), and changing the remit of Caldicott Guardians.  Not sure about the last one – I would need to think it through from a patient perspective in the context of a ‘localised’ NHS.   But good to open the debate.  For the results of the survey and an overview it might be easiest to read the guest spot on the Association of Medical Research Charities (AMRC) blog by Joe Clift from BHF. 

A number of BHF’s recommendations are focused on the HRA, so a brief ‘congratulations’ to the excellent Janet Wisely who was recently appointed Chief Executive there and has really taken up the public involvement challenge.

Finally, the entirely new kids on the block are AHSN’s or Academic Health Science Networks.

The Department of Health published a guidance document about their formation on Friday, and potential networks have been asked to submit ‘expressions of interest.’  AHSNs really do represent a significant and positive enhancement in terms of where research meets the NHS.  It is not so much what they are as an entity as what they will bring together in terms of local NHS organisations, academia, industry, providers etc behind a common purpose.  It is also the comprehensiveness of their remit given that they will not just be responsible for the diffusion of innovation but also the promotion of research including trials and public participation.  I suspect more change will ripple outwards.  The Governance arrangements will, however, need to be strengthened with strong public involvement mechanisms.

Perhaps AHSN’s represent new lava flows in research bringing more fertile grounds for growth with them.

 

 

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