Tackling treatment uncertainties together: the evolution of the James LindInitiative, 2003–2013

Abstract

Summary The James Lind Initiative (JLI) was established in 2003 in response to a call by the Medical Research Council, endorsed by the Department of Health (DH), for the creation of 'a communications and discussion forum on randomized controlled trials, involving patients, practitioners, research- ers, and others'. This brief was approached indirectly by encouraging more explicit acknowledgement of uncertainties about the effects of treatments. Between 2003 and 2013, the JLI developed the UK Database of Uncertainties about the Effects of Treatments (UK DUETs) to assemble and publish uncertainties (www.library.nhs.uk/duets/), and the James Lind Alliance (JLA) to provide a formal structure within which patients and clinicians could identify uncertainties and agree priorities for research (www.lindalliance.org). UK DUETs and the JLA have both now been mainstreamed, UK DUETs by incorporation within the National Institute for Health and Clinical Excellence (NICE), the JLA by designation as a partner organization of NIHR, managed by the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC). Parallel to its development of methods for research prioritization, the Initiative has worked with others to produce printed and digital resources (www.jameslindlibrary.org; www.testingtreatments.org) to help enhance general knowledge about why it is important to address uncertainties about the effects of treat- ments; how to recognize rigorous tests of treatments; and how to reduce avoidable waste in research. The JLI will continue to work on these resources and themes over coming years.