Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study

Karin Jongsma,Juliette Van Seventer,Anouk Verwoerd,Annemiek Van Rensen

doi:10.1186/s40900-020-00240-3

Abstract

BackgroundThe James Lind Alliance (JLA) offers a method for research priority setting with patients, clinicians and carers. The method is increasingly used but publications primarily discuss the outcome of such projects, rather than reflecting on the JLA method itself. Scrutiny of the method is crucial in order to understand and correctly interpret its outcomes.MethodsWe conducted a qualitative interview study with people involved in a JLA project into Juvenile Idiopathic Arthritis (JIA) (n = 30) to better understand the mechanisms, procedures and decisional processes during such a project and to formulate recommendations for those who consider starting a JLA project in the future.ResultsFour main themes were identified: 1) motivations, goals and expectations 2) inclusivity, roles and representation 3) procedures and decision-making 4) outcomes and future steps.ConclusionWhile the top 10 of ‘evidence uncertainties’ seems to take the centre stage in JLA projects, the ways in which these priorities are determined may be influenced by ‘process uncertainties’. We have formulated ten specific recommendations for future JLA projects. Reflection on and reporting of these process uncertainties would contribute to the improvement of JLA projects and increase the validity of the outcome of such projects.

Highlights

Patient and public involvement (PPI) is increasingly fostered in health care research, clinical care and health care policy [1, 2]
This study aims to fill these gaps by investigating the views, experiences and recommendations of participants involved in a James Lind Alliance (JLA) project into Juvenile Idiopathic Arthritis (JIA) through a qualitative interview study
We performed a qualitative interview study to investigate the views and experiences of patients, clinicians and carers who have contributed to the JLA PSP for JIA

Summary

Introduction

Patient and public involvement (PPI) is increasingly fostered in health care research, clinical care and health care policy [1, 2]. Jongsma et al Research Involvement and Engagement (2020) 6:68 research conducted by academic researchers and the needs that users such as patients, carers and clinicians have [3, 4]. The James Lind Alliance (JLA) offers a method for better aligning (bio)medical research agendas with the needs of patients, carers and clinicians by bringing them together in Priority Setting Partnerships (PSPs). Several factors in the process, including participant selection and the arrangement of decision-making processes, may influence the process and the outcome of such projects. One review has indicated the increasing use of the JLA approach for research priority setting and remarked that only little attention has been paid to disagreements and factors influencing the decision-making process in the reporting of these studies [5]. The James Lind Alliance (JLA) offers a method for research priority setting with patients, clinicians and carers. Scrutiny of the method is crucial in order to understand and correctly interpret its outcomes

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Conclusion