Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study
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(2020) 6:68
RESEARCH ARTICLE
Open Access
Recommendations from a James Lind Alliance priority setting partnership - a qualitative interview study Karin Jongsma1* , Juliette van Seventer1, Anouk Verwoerd2,3 and Annemiek van Rensen4
Abstract Background: The 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. Methods: We 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. Results: Four main themes were identified: 1) motivations, goals and expectations 2) inclusivity, roles and representation 3) procedures and decision-making 4) outcomes and future steps. Conclusion: While 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.
Plain English summary The James Lind Alliance has developed an approach to identify shared research priorities of patients, health care professionals and carers. While the outcomes of such projects have often been described in the literature, the process itself is not. We have interviewed patients, health care professionals and parents of children with Juvenile Idiopathic Arthritis who participated in a research priority setting partnership of the James Lind Alliance. This interview study focused on their experiences with the process of establishing a shared research * Correspondence: [email protected] 1 Department of Medical Humanities, University Medical Center Utrecht, Julius Center for Health, Sciences and Primary Care, PO Box 85500, 3508, GA, Utrecht, The Netherlands Full list of author information is available at the end of the article
agenda. Our interviewees have pointed out 4 main topics that deserve attention in (future) agenda setting initiatives: 1) motivations, goals and expectations 2) inclusivity, roles and representation 3) procedures and decision-making 4) outcomes and future steps. We conclude that specific process details of a priority setting partnership are important because they affect the influence people have on the outcome. We have formulated 10 recommendations to further improve future priority setting partnerships that follow the approach of the James Lind Alliance.
Introduction Patient and public involvement (PPI) is increasingly fostere
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