Chapter 1: Introduction
Welcome to the James Lind Alliance (JLA) Guidebook. The Guidebook is aimed at people that are interested in the JLA’s priority setting process: namely, patients and their carers, clinicians and the organisations that represent them. It gives step-by-step guidance to establishing and managing a Priority Setting Partnership (PSP) and the principles behind it. PSPs bring patients, their carers and clinicians together to identify and prioritise unanswered questions about the effects of treatments ('treatment uncertainties') in specific conditions or areas of healthcare for research, using JLA methods.
It is recognised that many PSPs now interpret this definition more broadly and extend their scope beyond identifying and prioritising ‘treatment uncertainties’. This has been an important development and one which helps the JLA to adapt to the changing health and care landscape and to the changing needs of its users.
The Guidebook is intended to help PSPs work effectively using tested methods to ensure credible and useful outcomes.
Research priority setting: why involve patients and clinicians?
Research on the effects of treatments often overlooks 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 is often a mismatch between the research being carried out and the research evidence needed by patients and clinicians every day 1, 2 . This also leads to an avoidable waste of precious research funds 3. The JLA method was developed to address this.
Focusing on specific conditions, or areas of healthcare, the JLA facilitates PSPs which:
- bring patient, carer and clinician groups together on an equal footing
- identify treatment uncertainties which are important to both groups
- work with both groups to jointly prioritise the uncertainties
- produce a 'Top 10' list of jointly agreed uncertainties as research questions to be presented to funders.
1. Tallon, D et al. (2000) ‘Relation between agendas of the research community and the research consumer’. The Lancet, volume 355:2037–40
2. 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
3. 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