title: Involving people with diabetes and the wider community in diabetes research: a realist review protocol.
abstract: BACKGROUND
  Patient 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
  This 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.
authors.affiliation: School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK. janet.harris@sheffield.ac.uk.|Faculty of Health and Social Sciences, Bergen University College, Bergen, Norway. janet.harris@sheffield.ac.uk.
authors.forename: Janet
authors.initials: J
authors.lastname: Harris
authors.affiliation: Faculty of Health and Social Sciences, Bergen University College, Bergen, Norway. marit.graue@hib.no.|Department of Paediatrics, Haukeland University Hospital, Bergen, Norway. marit.graue@hib.no.
authors.forename: Marit
authors.initials: M
authors.lastname: Graue
authors.affiliation: Centre for Nursing and Allied Health Research, Deakin University and Barwon Health, Geelong, Australia. TRIDUN@barwonhealth.org.au.
authors.forename: Trisha
authors.initials: T
authors.lastname: Dunning
authors.affiliation: Faculty of Health and Social Sciences, Bergen University College, Bergen, Norway. johannes.haltbakk@hib.no.
authors.forename: Johannes
authors.initials: J
authors.lastname: Haltbakk
authors.affiliation: Faculty of Health and Social Sciences, Bergen University College, Bergen, Norway. gunhild.austrheim@hib.no.
authors.forename: Gunhild
authors.initials: G
authors.lastname: Austrheim
authors.affiliation: Diabetes Association, Oslo, Norway. nina.skille@diabetes.no.
authors.forename: Nina
authors.initials: N
authors.lastname: Skille
authors.affiliation: Department of Global Public Health and Primary Care, The Faculty of Medicine and Dentistry, University of Bergen, Bergen, Norway. berit.rokne@igs.uib.no.|Department for Research and Development, Haukeland University Hospital, Bergen, Norway. berit.rokne@igs.uib.no.
authors.forename: Berit
authors.initials: B
authors.lastname: Rokne
authors.affiliation: Faculty of Health and Social Sciences, Bergen University College, Bergen, Norway. marit.kirkevold@medisin.uio.no.|Department of Nursing Science, Institute of Health and Society, University of Oslo, Oslo, Norway. marit.kirkevold@medisin.uio.no.
authors.forename: Marit
authors.initials: M
authors.lastname: Kirkevold
mesh_terms: D035843:Biomedical Research / Q000379:methods*; D003256:Community Participation; D055812:Community-Based Participatory Research; D003920:Diabetes Mellitus / Q000628:therapy*; D006801:Humans; D010358:Patient Participation; D012107:Research Design; D012196:Review Literature as Topic