The devil’s in the manual – health research regulation and public involvement @HRA_Latest

When I was growing up I used to help my Dad do DIY around the house.  Our perennial companion was a thick, hard-bound manual with step-by-step guides on how to do anything and everything.  No job was too big or too small for it.  From replacing a chimney stack to changing a plug.

Dad passed the manual on to me.  But years of use took their toll on the trusty tome,  the spine gave way and pages were lost.  Now we have Google, YouTube and all sorts. But there is still something I miss about that manual.  The sense that when you opened it, years of experience oozed through its clear instructions and helpful pictures.

We don’t have a manual for public involvement. Perhaps we should (Discuss?). But we do have a manual for doing research.  It’s called the UK Policy Framework for Health and Social Care Research and the Health Research Authority (HRA) – together with the Governments of Scotland, Wales and Northern Ireland – are consulting on a new version which you can find here.

To quote the official record, the Framework sets out ‘principles of good practice in the management and conduct of health and social care research in the UK…..It will replace the four separate Research Governance Frameworks previously issued by each UK Health Department.’  This isn’t some bit of guidance that is left on the shelf to gather dust.  It’s the foundation stone for ensuring that research is promulgated in the public interest.

HRA’s grown-up attitude to public involvement is reflected in the fact that references to  public involvement – and the need to protect and promote the public interest – are peppered throughout the document.  Attention to getting the detail right will be important.  In the  ‘literal’ world of research, requirements need to be spelled out precisely if they are to be acted upon. As patients we know that things will often not happen unless they are set out in this way – the devil is in the manual!

For instance, it will be important that the Framework is more assertive about the responsibility of researchers to acknowledge the contribution of research participants; to make the results of their work readily available to these partners.  Also, what this looks like in practice: how does a researcher go about achieving this goal?

Should there also be a section setting out the responsibilities of patients and the public in ensuring good research practice?  The document sets out the principles that apply to organisations and their staff doing the work. But not the citizens involved in making it happen. Should we – you and me – be allowed to go scot-free? What are our responsibilities and duties? 

Finally, I wonder whether we could do with a bit more oomph in the document.  A preamble that will be passed down through the ages.  You might recognise the origins of the following that I wrote this afternoon?

“We the research community of the UK – including patients and the public , in order to do better research to improve health and wellbeing, ensure that it is done safely, in the public interest, and in such a way as to promote and advance the greater contribution of the public to this endeavour, do ordain and establish this Framework for the UK research system.’

Well, you can have your say by taking part in the HRA’s online survey here. Or by attending one of the workshops including two being held for patients and service users in Birmingham (Feb 24th) or London (9th March).  More details here.

Have a good evening.



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