Abstract

BackgroundPatient and public involvement in diabetes research is an international requirement, but little is known about the relationship between the process of involvement and health outcomes.ObjectiveThis realist review identifies who benefits from different types of involvement across different contexts and circumstances. Search strategies Medline, CINAHL and EMBASE were searched to identify interventions using targeted, embedded or collaborative involvement to reduce risk and promote self‐management of diabetes. People at risk/with diabetes, providers and community organizations with an interest in addressing diabetes were included. There were no limitations on date, language or study type.Data extraction and synthesisData were extracted from 29 projects using elements from involvement frameworks. A conceptual analysis of involvement types was used to complete the synthesis.Main resultsProjects used targeted (4), embedded (8) and collaborative (17) involvement. Productive interaction facilitated over a sufficient period of time enabled people to set priorities for research. Partnerships that committed to collaboration increased awareness of diabetes risk and mobilized people to co‐design and co‐deliver diabetes interventions. Cultural adaptation increased relevance and acceptance of the intervention because they trusted local delivery approaches. Local implementation produced high levels of recruitment and retention, which project teams associated with achieving diabetes health outcomes.Discussion and ConclusionsAchieving understanding of community context, developing trusting relationships across sectors and developing productive partnerships were prerequisites for designing research that was feasible and locally relevant. The proportion of diabetes studies incorporating these elements is surprisingly low. Barriers to resourcing partnerships need to be systematically addressed.

Highlights

  • Research on the social determinants of health shows that the living conditions of people with diabetes, including cultural background, economic circumstances and built environment, can interfere with the potential effectiveness of interventions.[1]

  • There are no published studies concerning the effectiveness of involving patients and the public in adapting diabetes interventions to reduce diabetes risk or achieve better diabetes self‐management.[5]

  • This review found that projects which promote frequent and regular contact across researchers, patients with diabetes and wider communities are able to develop reciprocal relationships where the lived experiences of people are instrumental in developing and conducting relevant and accessible interventions promoting diabetes self‐management

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Summary

Introduction

Research on the social determinants of health shows that the living conditions of people with diabetes, including cultural background, economic circumstances and built environment, can interfere with the potential effectiveness of interventions.[1]. A recent meta‐review found 199 reviews published since 2010 on patient and community involvement in adapting interventions.[4] there are no published studies concerning the effectiveness of involving patients and the public in adapting diabetes interventions to reduce diabetes risk or achieve better diabetes self‐management.[5]. Search strategies Medline, CINAHL and EMBASE were searched to identify interventions using targeted, embedded or collaborative involvement to reduce risk and promote self‐management of diabetes. Partnerships that committed to collaboration increased awareness of diabetes risk and mobilized people to co‐design and co‐deliver diabetes interventions. Discussion and Conclusions: Achieving understanding of community context, developing trusting relationships across sectors and developing productive partnerships were prerequisites for designing research that was feasible and locally relevant.

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