Many patients and their families fighting for the right care or seeking redress for wrong-doing will eventually find a regulator in their way.
It takes courage, a strong heart and much tenacity to take on such organisations; these are the bodies that pull the levers, tug the strings but also seem to revel in complexity and obfuscation.
More ‘Don’t give an’ Oz’ than Wizard of Oz. Often with a path up to a firmly closed front door that is lined with guidelines and paved with yellow cards.
But, love or loathe them, regulators are essential in ensuring health care and research works in the interests of patients, carers and the public: regulating, monitoring, policing, reporting and, where necessary, applying sanctions. Essentially it is their actions that often influence and shape culture more than any other actor at play.
The natural and most obvious ‘step up’ for public involvement in the UK is to develop a whole system approach to research in which all partners – citizens, funders, professions, charities, universities etc. – are focused on co-producing research which is focused on patient and carer need and working to some clear standards of good practice (this latter we have a good head start on with the UK Public Involvement Standards).
In my view, we are closer than any other nation in achieving this for many reasons – from geography to cultural values, the nature of our integrated health system to the depth and breadth of public involvement now happening across all sectors.
If you accept this – and you may not for many good reasons – then our regulators loom large in importance. They must get the basic things right – being accessible, responsive, open and fair in how they work with people when things go wrong in ways they haven’t done so thus far. But they must also step into the ring on public involvement and help foster its strategic development.
This summer there are signs that this may be happening in research. The Health Research Authority (HRA) – still a relatively young organisation whose mission is to ‘promote and protect the interests of the public’ – is conducting a consultation on research transparency guided by a Research Transparency Group which includes public members.
It’s ‘MakeItPublic’ strategy and consultation proposes to ensure research participants receive the results of studies and putting plain English summaries of results in the public domain to fining institutions that are persistent offenders on transparency. Can we push it further? Well, you can take part in an online survey or attend one of their workshops around the country with more details on both here. The consultation ends on 6th September.
Meanwhile the HRA’s bedfellow the Medicines and Healthcare products Regulatory Agency (MHRA) is more hindered by history and has struggled to find its feet when it comes to public involvement. But it has now published its own consultation on how the MHRA should engage and involve patients and the public in its work. The results of this will inform the development of a strategy and you can take part here. The deadline is 7th October.
At a recent conference where I was talking about the future of public involvement someone put their hand up and suggested we needed regulation. I flippantly said this was the last thing we needed. But maybe they were right. Perhaps we do need regulation if not the regulators on our side.