The James Lind Alliance process approach: scoping review

Abstract

Objective: To summarise study descriptions of the James Lind Alliance (JLA) approach to the priority setting partnership (PSP) process and how this process is used to identify uncertainties and to develop lists of top 10 priorities.

Design: Scoping review.

Data sources: The Embase, Medline (Ovid), PubMed, CINAHL and the Cochrane Library as of October 2018.

Study selection: All studies reporting the use of JLA process steps and the development of a list of top 10 priorities, with adult participants aged 18 years.

Data extraction: A data extraction sheet was created to collect demographic details, study aims, sample and patient group details, PSP details (eg, stakeholders), lists of top 10 priorities, descriptions of JLA facilitator roles and the PSP stages followed. Individual and comparative appraisals were discussed among the scoping review authors until agreement was reached.

Results: Database searches yielded 431 potentially relevant studies published in 2010-2018, of which 37 met the inclusion criteria. JLA process participants were patients, carers and clinicians, aged 18 years, who had experience with the study-relevant diagnoses. All studies reported having a steering group, although partners and stakeholders were described differently across studies. The number of JLA PSP process steps varied from four to eight. Uncertainties were typically collected via an online survey hosted on, or linked to, the PSP website. The number of submitted uncertainties varied across studies, from 323 submitted by 58 participants to 8227 submitted by 2587 participants.

Conclusions: JLA-based PSP makes a useful contribution to identifying research questions. Through this process, patients, carers and clinicians work together to identify and prioritise unanswered uncertainties. However, representation of those with different health conditions depends on their having the capacity and resources to participate. No studies reported difficulties in developing their top 10 priorities.

Keywords: James Lind Alliance; patient and public involvement; patient involvement in research; priority setting partnership.