The health research culture will have changed when no one looks at their shoes embarrassed at the mention of public involvement

If you were not invited to No 10 Downing Street yesterday, then you could have trotted along to the event jointly organised by the Academy of Medical Sciences, Cancer Research UK and the Wellcome Trust to discuss and debate the environment for UK health research.

This was really a chance to discuss progress on changing the regulatory and governance environment for research following the Academy’s review a year ago entitled: ‘A new pathway for the regulation and governance of health research.’  Quite a lot has happened since then.  The Health Research Authority has been established, the Government has announced a new life sciences package etc etc.  In fact, listening to the discussion it sounded as though it’s all going swimmingly…..I’m not sure things have turned round that smartly since 18 months ago but there has been undeniable progress in a system and process sort of way if you are a scientist.  But not culturally I would argue, and not in a way that embodies the ‘public interest’ goal of the new regulator, the HRA.

From a patient perspective these are the raw notes of what I said as one of the panellists (sorry that they are a bit long and to those of you there if it didn’t quite come out like this):

  1. One of the key strengths of health research has been the working partnership that has been established over time with patients and the public.  This partnership takes many forms:

The many thousands now actively involved as co-innovators helping to set research strategy, priorities and design research methodology; the hundreds of thousands now participating in clinical trials and other research; the millions who support research through research charity donations and fundraising or as its ambassadors.

We also know from surveys by AMRC and others that we have a society that is uniquely supportive of health research and of the role that the NHS should play.  This is a cornerstone of public trust and confidence in research and one we must work hard to involve, to strengthen and to maintain.

2. The environment for health research is changing rapidly and, with it, the context for this ‘working partnership.’  It presents some real opportunities to advance it further to deliver better healthcare:

The first is to embed active public involvement in what funders do in the name of health research and, indeed in the name of patients.  We know from the recent report by INVOLVE and NRES published last year that we are way off achieving the aspiration set by Dame Sally Davies that public involvement should be the rule not the exception in health research.  The future quality of health research depends on patients and the public being involved in its shaping and direction.

The second is to involve patients in developing the new architecture for health research regulation and governance so that it works in the mutual interests of researchers and patients, most notably but not exclusively through the new Health Research Authority (HRA) and the new governance systems for data-sharing.

From a patient perspective much of our agenda today will be focussed on things ‘below the water-line’ – making the engine and its mechanics work better and more efficiently, impacting on patients but not necessarily high in the public consciousness.

2. I’d like to finish on two ‘above the line’ features of how the environment has to change for patients if we are to build on the foundation that I set earlier.

The first is to improve the clinical trial (and other research) experience for patients.  I was very struck at the launch of healthtalkonline’s new modules on patient experiences of clinical trials in child health just a few weeks ago, at the frustration among patients that, in spite of regularly volunteering to take part in clinical trials, very rarely are they told afterwards about the results of the trials, what it could mean in terms of future treatment. There seems to be an element of ‘good customer care’ that is missing from our overall attitude towards patients in this regard and we must get better at it. But perhaps we might be braver than this and push the Prime Minister’s notion of every willing person being a ‘research patients’ to that of being involved as ‘research citizens’ entitled to certain rights and recognition in return for their involvement.

The second is to make research a ‘front-of-office’ feature of the NHS.  We need to do much more to help patients engage and participate in research, to give them clear routes and license to approach and be approached by health professionals about research from which they might benefit.  The new duties laid at the door of the new NHS structure in the legislation will help.  But this means a new duty on us as a community to make this happen.  The research community is an extremely effective and constructive lobby group but it has yet to really turn its attention to this long-standing issue which stands oin the way of the public accessing new treatments and better care.

If we want willing patients, we must also have a willing NHS.

ENDS

A few interesting things to note about the discussion afterwards.

It looks like the Academy plans to review this area again in a year’s time – it’s going to be important that they include patients and the public in that review.

It was remarkable that there seems no consensus across the research community about the data on UK clinical trials and whether the number, participation % of global market etc, is going up, down or all around. That wouldn’t be so bad if everyone wasn’t so obsessed at pointing to it as a sign of failure, success or otherwise.

Also, I just wonder whether, from a public and patient point of view, we ought not to be looking to measure their experience of research through the surveys done by the Care Quality Commission, Picker Institute and others.  How soon after diagnosis of their condition did they learn about research; from whom; how good was the information etc?  This is important stuff we are not capturing.

I was in ultra-reasonable mood yesterday as you can tell from the above.  But as I presented my closing remarks and looked into the audience, I couldn’t shift this thought: that I’ll know when we have really changed the culture within health research when no one shifts in their seats or looks at their shoes as though they are rather embarrassed at the mere mention of public involvement

 

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