Study author Iain Chalmers, one of the founders of the Cochrane Collaboration and James Lind Alliance, said: "We have confirmed earlier, less extensive studies indicating important mismatches between what patients and health professionals want to see researched, and the research that is actually done. On average, patients and clinicians prefer the evaluation of non-drug treatments, while researchers tend to prioritise studies into drug treatments.
"This discrepancy was first uncovered 15 years ago, and so it is disappointing that the situation still has not improved. The research community needs to make greater efforts to involve patients and health care professionals in setting research agendas, and take account of their views."
The James Lind Alliance is an initiative that establishes partnerships between patients, carers and clinicians to inform treatment research agendas. Each of these 'Priority Setting Partnerships' (PSPs) identifies the top research priorities relating to specific health problems, including Type 1 diabetes, schizophrenia, stroke and eczema.
In the study, the researchers identified the research priorities of 14 PSPs, which highlighted 126 different treatments. They then compared these with the treatments being studied in UK clinical trials registered between 2003 and 2012 in the WHO's International Clinical Trials Registry Platform. These included 1,682 research studies (53% non-commercial research, 47% commercially-funded).
The results revealed marked differences between the types of treatments highlighted by patients, carers and clinicians as priorities, and those being evaluated by researchers. In PSPs, drug interventions accounted for only 18% of the treatments mentioned as priorities, while they accounted for 37% of treatments evaluated in non-commercial trials and 86% of treatments evaluated in commercial trials.
A very low proportion (2.6%) of registered commercial trials studied the effects of the non-drug treatments that were priorities for patients and clinicians. The authors say this suggests that few of the drug trials can have used non-drug comparators, for example, comparing anti-depressant drugs with psychological therapies for treating depression.
The study suggests there may also be 'methodological disincentives' for researchers to include non-drug comparators. This is because designing, running and interpreting drug trials will usually be more straightforward compared with evaluating psychological or physical therapies, and other non-drug treatments.
The authors say that an obvious explanation for this mismatch is that the users of research evidence - patients, carers and clinicians - apparently only very rarely contribute to setting research agendas. Therefore the research questions rated as important to them may simply never occur to researchers.
They add: "If research is to reflect the priorities of patients and clinicians, leadership and incentives will be needed. The current research 'system' and culture is not geared to bridging the mismatch we have documented."
The authors warn that similar findings may not necessarily result in replication of similar analyses done for other health problems, or for replications that are not limited to the very highest priorities that the PSPs aim to identify.
The research article marks the launch of the open access journal Research Involvement and Engagement, which recognises the importance of patient and the wider public input in co-producing knowledge. The Editorial Board is representative of both patients and academics, with all articles peer reviewed by both groups and carrying equal weight in the editorial decision.
Sally Crowe, Mark Fenton, Matthew Hall, Katherine Cowan and Iain Chalmers
Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch
Research Involvement and Engagement 2015. doi: 10.1186/s40900-015-0003-x