James Lind Alliance (JLA) priority setting partnerships (PSPs) are a cornerstone of much of our patient involvement work here in Oxford, and I’ve written about them many times on this blog. Encouraging, patients, carers and health and social care professionals to decide what research matters, they exclude pure researchers who never see patients and the drug industry. The idea behind them came in part from evidence of a mismatch between patient priorities and the research agenda in osteoarthritis.
Some of the key players in the JLA have just published a brilliant paper in Research Involvement and Engagement (RIE), a new journal written with patients at its heart, highlighting this gulf between patient and clinician priorities and what research is actually conducted. Written by Sally Crowe, Iain Chalmers and colleagues, the paper compares the treatments assessed in clinical trials carried out between 2007-2014, in areas including Type 1 diabetes, eczema and stroke, to see to what extent they were similar to those “voted for” within PSPs during the same period.
The short answer is, “not very.” Priorities identified by JLA PSPs emphasised the importance of non-drug treatment research, while the trials being done mostly involved evaluations of drugs. As Sally and her colleagues conclude “These findings suggest that the research community should make greater efforts to address issues of importance to users of research, such as patients and healthcare professionals.”
This sentence reminded me of a conversation with a geneticist colleague who was cautiously interested in using the JLA process to guide his research. He asked to see some “top 10” priorities from previous PSPs in a range of disease areas, read them, grimaced a little, and said “Hmm – but of course these are the sort of questions that matter to patients, but it’s not what we do.” Needless to say, I haven’t heard from him again about doing a PSP.
PSPs are only one way to set the research agenda, and for those whose days are spent tinkering with test tubes in the lab, they can be quite disconcerting, possibly even a little threatening. Such folk say – and I have a degree of sympathy – that unless you know about the mechanics and power of lab research to elucidate the causes of disease – and many patients/carers and clinicians won’t – you are unlikely to suggest these as routes to better understanding of given conditions.
Simon Denegri, National Director for Patients and the Public at the National Institute for Health Research (NIHR), recently wrote on his blog “From an NIHR point of view we should ensure reviewers are aware of PSPs relevant to the programme or scheme to which they are applying. Applicants should be guided to explain in their application how their proposal will address them.” But he added that if researchers don’t follow the JLA lead, “there may be good reasons.”
I hope this last comment helps to reassure people like my worried geneticist that his territory is not about to be expunged from the research landscape. One can (and I often have) debated the merits of test-tube tinkering versus more patient-focused research. I used to do the former myself in an attempt to understand the causes of motor neurone disease. I doubt that patients struggling with the grim daily realities of the condition would have cited my focus as their priority, but had we been successful, we would have gained important clues as to how to prevent and treat the condition.
There are arguments for research across the spectrum, but, thinking back to the work that underpins the JLA, if vast research effort is focused on industry-supported drug trials while patients cry out for better understanding of physiotherapy, surgery and coping strategies, this may in turn be a hint that even lab researchers need to think again about where their efforts lie.
I know from chatting to Sally and Iain that they didn’t find it easy to get this paper published, and Sally is co-author on another comparing current research in kidney disease and dialysis with that identified through JLA work on dialysis, which is now on its 9th submission. Iain wonders whether “there’s something fishy going on”. And I don’t know the answer: the reasons papers are rejected are manifold (believe me, I must have received them all), but I am repeatedly struck by a degree of edginess within the research community about letting patients onto their territory. Which leads me back to the question I often ask myself “Whose research is it anyway?”