The James Lind Alliance process approach: scoping review

Abstract

ObjectiveTo 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.DesignScoping review.Data sourcesThe Embase, Medline (Ovid), PubMed, CINAHL and the Cochrane Library as of October 2018.Study selectionAll 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 extractionA 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.ResultsDatabase 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.ConclusionsJLA-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.

Needs-Led Research: A Way of Employing User Involvement in Establishing Research Questions on the Trust Model Within Community Home-Based Health Care Services in Norway

“…It is highly likely that we did not reach the weakest voices when conducting this process, i.e. individuals in low socioeconomic groups, with low health literacy or who have no access to the internet and social media (8). Consideration should be given to identifying submissions from the service users separately if conducting a similar process in a larger project.…”

“…There are probably as many approaches to user involvement in research prioritisation as there are priority-setting exercises, and a gold standard is therefore not attainable, nor is it appropriate (7). The James Lind Alliance process focuses on bringing together service users, next of kin and clinicians, also referred to as stakeholders, on equal terms to explore research priorities in a priority-setting partnership (8), and the framework was found t for the purpose as inspiration (7,9). Although PPI is applied in many studies, detailed descriptions of the process of involving participants/stakeholders are still lacking (4,10).…”

“…Therefore, the decision was made to focus on what the services should contain or deliver. The questions were open-ended to encourage full responses regarding experiences and perceptions of service users, next of kin and clinicians(8).…”

Patient-oriented research: a new model for anesthesia in the 2lst century?

“…9 Moreover, the refinement of raw research suggestions into a shortlist of ''indicative'' research questions is a subjective process that often involves rewording of questions, amalgamation of similar themes, the finer details of which have been shown to vary significantly between different PSPs. 10 While the CAR PSP appears to have followed the JLA methodological principles in reducing a list of 500? suggestions into a manageable shortlist of 49, this area of JLA methodology clearly requires further scrutiny.…”

“…9 Qui plus est, le peaufinage de suggestions de recherche brutes en une présélection de questions de recherche « indicatives » est un processus subjectif qui implique souvent de réécrire les questions, d'amalgamer des thèmes semblables, et il a été démontré que cela peut varier beaucoup d'un PSP à l'autre. 10 Bien que le CAR PSP semble avoir respecté les principes méthodologiques de la JLA en réduisant une liste de plus également un débat approfondi sur le rôle de la recherche axée sur le patient en anesthésie et en médecine périopératoire. Alors que la plupart d'entre nous sommes d'accord que l'un des buts ultimes de la recherche en anesthésie est d'améliorer les devenirs des patients, le temps et l'énergie des patients et du grand public ne sont pas infinis.…”