Chapter 2: James Lind Alliance Methods and Principles

Why involve patients and clinicians in setting research priorities?

People have suffered and died unnecessarily because uncertainties about the effects of treatments have not been addressed in research [1], [2], [3] .  Patients and the public have a right to expect that research funders, researchers and health professionals will identify uncertainties about whether treatments or other interventions are doing more harm than good or whether one treatment is better than another, and should expect them to organise the research needed to reduce the most important of these uncertainties.

Historically, research on the effects of treatments has overlooked the shared priorities of patients, carers and clinicians.  The pharmaceutical and medical technology industries and academia play essential roles in developing and testing new treatments, but their priorities are not necessarily the same as those of patients and clinicians.  Many areas of potentially important research are therefore neglected, and there can be a mismatch between the research being carried out and the research evidence needed by patients and clinicians every day [4],[5].  This also leads to an avoidable waste of precious research funds [6].  The JLA method was developed to address this.

[1] Chalmers, I. ‘Confronting therapeutic ignorance’. BMJ 2008;337:a841

[2] Chalmers, I. ‘Well informed uncertainties about the effects of treatments’. BMJ 2004;328:475-6

[3] Evans, I., Thornton, H., Chalmers, I., Glasziou P, ‘Testing Treatments: better research for better healthcare’ (2011)

[4] Tallon, D et al. (2000) ‘Relation between agendas of the research community and the research consumer’. The Lancet, volume 355:2037–40

[5] Crowe, S et al. (2015) ‘Patients, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch’.  Research Involvement and Engagement 2015, 1:2

[6] Chalmers I, Glasziou P, ‘Avoidable waste in the production and reporting of research evidence’, The Lancet, Volume 374, Issue 9683, Pages 86 - 89, 4 July 2009, doi:10.1016/S0140-6736(09)60329-9 2