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Does funded research reflect the priorities of people living with type 1 diabetes? A secondary analysis of research questions

Boddy, Kate; Cowan, Katherine; Gibson, Andy; Britten, Nicky

Authors

Kate Boddy

Katherine Cowan

Andy Gibson Andy.Gibson@uwe.ac.uk
Associate Professor in Patient and Public Involve

Nicky Britten



Abstract

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. Objectives This study explored the divergence and convergence between funded research about type 1 diabetes and the research agenda of people living with the condition and their carers. Design, method, setting A secondary analysis was undertaken of existing data from two UK organisations who regularly work with patients and carers to identify research priorities. The research ideas of people with diabetes were identified in two ways: in 15 research question generation workshops involving approximately 100 patients and carers, and in a James Lind Alliance Type 1 Diabetes Priority Setting Partnership with approximately 580 patients, carers and clinicians (clinician question submissions were excluded from analysis). A total of 859 individual research questions were collected from patients and carers. Diabetes research funding activity was identified through extensive online searches which provided a total of 172 relevant research projects for analysis. Results The data were thematically analysed and areas of priority for research identified and compared between the patient and funded research agendas. The overall finding of this study is that there is substantial convergence between the two research agendas, alongside some important areas of divergence. The key areas of divergence were found in care delivery, injection issues, psychosocial impacts and women's health. We also demonstrate how an apparently convergent priority can host significant differences in emphasis between patientgenerated and funded research agendas. Conclusions We offer a comparison of a funded research agenda with one that has been derived directly from people with type 1 diabetes without initial framing by researchers. This provided a rare opportunity to explore the viewpoints of the end-users of research and compare them to realised research as determined by researchers and research organisations.

Journal Article Type Article
Publication Date Sep 1, 2017
Journal BMJ Open
Electronic ISSN 2044-6055
Publisher BMJ Publishing Group
Peer Reviewed Peer Reviewed
Volume 7
Issue 9
Pages e016540
APA6 Citation Boddy, K., Cowan, K., Gibson, A., & Britten, N. (2017). Does funded research reflect the priorities of people living with type 1 diabetes? A secondary analysis of research questions. BMJ Open, 7(9), e016540. https://doi.org/10.1136/bmjopen-2017-016540
DOI https://doi.org/10.1136/bmjopen-2017-016540
Keywords research agendas, patient and public involvement, diabetes
Publisher URL http://dx.doi.org/10.1136/bmjopen-2017-016540

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