How the James Lind Alliance Works

Research on the effects of treatments often overlooks the shared interests of patients and clinicians. As a result, questions they both consider important are not addressed. For example when patients, rheumatologists, physiotherapists and general practitioners were asked to identify their priorities for research on the management of osteoarthritis of the knee, there was little enthusiasm for the studies of drugs that the pharmaceutical industry typically supports. Instead, patients and clinicians wanted more rigorous evaluation of the effects of physiotherapy and surgery, and better assessment of the educational and coping strategies that might help patients to manage this chronic, disabling and often painful condition (Tallon et al. Lancet 2000;355:2037-40).

The pharmaceutical and medical technology industries and academia play an essential role in developing new treatments. However, the priorities of industry and academics are not necessarily the same as those of patients and clinicians. For this reason many areas of potentially valuable research are neglected.

Furthermore, it should not be assumed that patients and clinicians will always have the same research priorities, unless a process to assess these priorities – like that used for osteoarthritis - has shown that they do. The James Lind Alliance has been established to encourage and facilitate such a process in other areas.

The JLA has been established to help identify and confront uncertainties about the effects of treatments considered important by patients and clinicians. The JLA will promote two principles: first, that addressing uncertainties about the effects of treatments should become accepted as a much more routine part of clinical practice; and second, that patients and clinicians should work together to agree which, among those uncertainties, matter most and thus deserve priority attention.

Specifically, the JLA will facilitate the identification of research priorities shared by patients and clinicians, hence its strapline – ‘tackling treatment uncertainties together’. This approach to identifying research priorities remains very rare. Most funding bodies consult professionals when they decide which areas of research to support, and sometimes patients and/or the public are involved in the design of particular projects.  But few actively seek to establish which areas both professionals and patients agree require further investigation.

The JLA wishes to promote such a joint approach for two reasons. First, identification of uncertainties about the effects of treatments deemed important both by patients and by clinicians is important in its own right, and second, because those who fund and support therapeutic research should take particular notice of these shared priorities.

As used in JLA discourse and documents, ‘patients’ includes patients and those (such as carer groups/charitable groups) who advocate for those patients who are unable to do so for themselves; ‘clinicians’ implies all health and social service professionals (doctors, nurses, therapists and others who treat patients), not just those who are medically qualified; and ‘treatments’ implies all forms of therapeutic intervention for patients, including, for example, drugs, devices, surgical operations, psychological and physical therapies, educational strategies, and the ways treatments are delivered (for example, coordinated care in stroke units).

The evidence from question-answering services for patients and clinicians is that most of their questions are about the effects of treatments. This is why the JLA is focusing on treatments. At this stage in its development, the JLA will not attempt to deal with unanswered questions about the frequency, causes and diagnosis of health problems.

Regular meetings of the JLA will provide opportunities to review and evaluate the progress made by the JLA in meeting its objectives.

The Research Cycle - The James Lind Alliance, another way of thinking