Abstract
BackgroundPatient and public involvement in diabetes research is now actively encouraged in different countries because it is believed that involving people with experience of the condition will improve the quality and relevance of the research. However, reviews of patient involvement have noted that inadequate resources, patients’ and communities’ lack of research knowledge, and researchers’ lack of skills to involve patients and communities in research may present significant contextual barriers. Little is known about the extent of patient/community involvement in designing or delivering interventions for people with diabetes. A realist review of involvement will contribute to assessing when, how and why involvement works, or does not work, to produce better diabetes interventions.Methods/designThis protocol outlines the process for conducting a realist review to map how patients and the public have been involved in diabetes research to date. The review questions ask the following: How have people with diabetes and the wider community been involved in diabetes research? What are the characteristics of the process that appear to explain the relative success or failure of involvement? How has involvement (or lack of involvement) in diabetes research influenced the development and conduct of diabetes research? The degree of support in the surrounding context will be assessed alongside the ways in which people interact in different settings to identify patterns of interaction between context, mechanisms and outcomes in different research projects. The level and extent of the involvement will be described for each stage of the research project. The descriptions will be critically reviewed by the people with diabetes on our review team. In addition, researchers and patients in diabetes research will be asked to comment. Information from researcher-patient experiences and documents will be compared to theories of involvement across a range of disciplines to create a mid-range theory describing how involvement (or lack of involvement) in diabetes research influences the development and conduct of diabetes research.Electronic supplementary materialThe online version of this article (doi:10.1186/s13643-015-0127-y) contains supplementary material, which is available to authorized users.
Highlights
Patient and public involvement in diabetes research is actively encouraged in different countries because it is believed that involving people with experience of the condition will improve the quality and relevance of the research
RQ1: How have people with diabetes and the wider community been involved in setting priorities, designing and conducting diabetes research? RQ2: What are the main characteristics of the process that appears to explain the relative success or failure of involving people with diabetes and the wider community in diabetes research? RQ3: How has the involvement in diabetes research influenced the development and conduct of diabetes research?
The review team is comprised of a subset of researchers in the DiaHealth project, patients from the Diabetes Association and realist reviewers
Summary
Patient and public involvement in diabetes research is actively encouraged in different countries because it is believed that involving people with experience of the condition will improve the quality and relevance of the research. If people are involved in designing and studying an intervention, they may feel better able to manage chronic conditions [4]. The importance of involving communities and people in the design and delivery of interventions has been recently affirmed by Liu et al [3]. They found strong evidence that collaboration with local and respected leaders, institutions and professional organisations with expertise in experiences of ethnic groups was essential to recruit participants to research studies and design appropriate interventions. A similar review of the research is needed to determine whether active involvement produces more appropriate and acceptable interventions for people with diabetes
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