How patient and community involvement in diabetes research influences health outcomes: A realist review

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.

Effect of a telemedicine intervention for diabetes-related foot ulcers on health, well-being and quality of life: secondary outcomes from a cluster randomized controlled trial (DiaFOTo)

“…It is possible that it was too optimistic to expect that a relative short telemedicine intervention should affect patient reported outcomes. As to user involvement, one patient was part of the research team, however we could have invited a larger group of patients as co-workers leading to a more systematic coproduction and an intervention perhaps better tailored to patients' needs [24,31].…”

Systematically developing a family-based health promotion intervention for women with prior gestational diabetes based on evidence, theory and co-production: the Face-it study

“…They were also useful for promoting cross-sectional and cross-disciplinary collaboration and to encourage uptake of the intervention. High levels of involvement have been found to bene t collaboration, impose culture change and ownership among intervention deliverers (18,52,53). This is even more important to help secure acceptability and feasibility among the target group (54,55).…”

The Manage Care Model – Developing an Evidence-Based and Expert-Driven Chronic Care Management Model for Patients with Diabetes

“…As such, future research needs to uncover patient profiles which benefit most from specific interventions, whilst having a stronger emphasis on patients with multiple chronic conditions [72]. On the other hand, HCPs should also be involved in participatory research initiatives in order to include their perceptions on integrated care barriers [7,73,74]. Context, mechanisms and outcomes of multifaceted care needs to be part of future research in diabetes care [18].…”