Finding a reliable, transparent, and inclusive way of identifying and prioritizing clinical research priorities across health conditions and settings has been the work of the UK-based James Lind Alliance (JLA) for the last ten years.
The original idea behind the JLA was to bring together the day-to-day lives and experiences of people living with long-term conditions with those of the health and social care practitioners who care for them, to agree what research should be carried out.
Our starting point was that much research might not be very relevant, as it was driven by the drug industry and researchers who may never see patients. We found a small number of studies that supported our hunch of this mismatch between what was needed in research and what was actually being funded.
Bringing patients, carers and health and social care professionals together
We also found that many research funders worked hard to establish research excellence of their planned or actual investments, but less to establish the relevance of research. The JLA initiated a program of Priority Setting Partnerships (PSPs) that would bring patients, carers and health and social care professionals together to gather and prioritize research questions.
At about the same time, interest increased in the role of the public in research more generally and concepts such as open science were gaining ground. This was a bonus for the early development of the JLA about which there was caution and suspicion from some sectors of the research community. There were concerns as to how we might ‘dilute’ research quality, ‘dumb down’ science, and ‘skew’ research priorities.
There are plenty of methods to determine research priorities, but the fundamental flaw in many of these approaches is that they often rely on scientific and professional experts to set the research agenda, without meaningful patient or carer input.
The right people contributing to research priorites
For example, a systematic review of research priority setting for Chronic Kidney Disease (CKD) initiated by Allison Tong in Australia found that only 4 of 16 published priority setting exercises included people with CKD.
We had hoped to use this review as a basis for a patient, carer and health and social care practitioner consensus workshop held in Sydney, in February 2014, but were unable to do so given the bias towards professional viewpoints of CKD research, which would have been inherent from the start.
JLA PSPs ask contributors to tell them what they think is important in research, and the inclusion of a wide range of stakeholders yields surprising, rich and often challenging results.
The transparency of the process, (including declared research interests of all decision-makers in the PSP steering group), the inclusivity of participants (although this could always be improved), and the production of the priorities as a shared exercise (with all its ups and downs) makes for a ‘best effort’ to set a research agenda that has currency and relevance.
Researchers need to listen to the new priorities
However, setting research priorities is only a useful exercise if research funders, and researchers who often lead on funding applications, take note of them. The paper that this blog accompanies is a sobering description of the next challenge faced by the JLA, and those interested in less, but more relevant research (see also, this paper).
However, setting research priorities is only a useful exercise if research funders, and researchers who often lead on funding applications, take note of them.
The gap between the types of interventions generally funded in clinical trials (drugs) and the sort of interventions prioritized by JLA PSPs (nondrug interventions, such as physiotherapy or self-management programs) is marked. When can we expect a change in culture and commissioning that reflects these sorts of interventional studies, prioritized by patients and health and social care practitioners?
Prof Hywel Williams, a dermatologist speaking at a recent Evidence Live Conference, admitted that some of the priorities from the Eczema PSP (e.g. effective use of steroid cream) were old questions that no one was addressing.
I can confirm as a mum of a teenager with eczema this is a relentless and frustrating situation, the truth being we do what seems right at the time, which is hardly evidence based.
Hywel raises a tension between funding clinical research that is innovative and exciting, but may be to the detriment of research that addresses unanswered questions that bother patients, carers, and health and social practitioners every single day.
JLA PSPs have got much better at disseminating their priorities. A broad approach that raises awareness targeting likely funders can include academic publications, presentations, newsletters to communities of interest and even films.
The advent of social media in the lifetime of the JLA has made a huge difference to its reach, doing much to democratize research – which is what the JLA is all about.
I hope that this paper acts as a reminder that there is more work to be done to ensure research that matters to those at the sharp end of ill health is funded, and that we monitor the impact of these shared research priorities.
The ‘business as usual’ route is ready for a change of direction.