What do we know about the involvement of minority ethnic groups in health and social care research? A systematic review

The problem

Involving patients and public in research has become important to health and social care research, both in the UK and internationally. Researchers are encouraged to actively involve patients and the public in all stages of the research process. Recently, there has been an increase in the number of publications examining the impacts of patient and public involvement (PPI). However, those who are usually involved in PPI activities do not always represent people from diverse backgrounds. Moreover, there is no systematic review of the literature that has been undertaken to explore the involvement of minority ethnic groups in PPI in health and social care research.

The approach

A systematic review to explore the involvement of minority ethnic groups in health and social care research from an international perspective was conducted. We searched six bibliographic databases (Medline, Embase, HMIC, CINAHL, PsycInfo and EBM reviews) from 1990 onwards and retrieved 3272 papers. Following title and abstract screening, 208 relevant studies were identified for full-text screening. 63 unique studies were included for data extraction which is ongoing. Studies will be critically appraised using a tool informed by the Critical Appraisal Skills Programme, to assess the quality and impact of PPI. Additionally, the Guidance for Reporting Involvement of Patients and Public (GRIPP checklist) will be used to assess the quality of PPI reporting.

Findings

A scoping search suggested significant heterogeneity of published empirical literature, so a narrative synthesis will be undertaken. We will have full results by the time of the SAPC conference. Findings will focus on definition(s) of PPI from an international perspective, methods of recruitment (e.g. advertising online, newspapers, community centres), ways of involvement (e.g. telephone, face-to-face, e-mail, online forum), levels of PPI (e.g. consultation, collaboration), stages of involvement (identifying and prioritising research topics, research design and management, data collection), types of people involved (e.g. adults, ethnicity), health topic focus (e.g. patient safety/conditions including diabetes, arthritis, kidney disease) and any reported barriers and enablers to involvement.

Consequences

Members of minority ethnic groups are generally underrepresented in health and social care research and PPI. This review will contribute to a better understanding of how to recruit and involve members of minority ethnic groups in a PPI capacity, and identify any potential issues to involving them in health and social care research.

Credits

• Shoba Dawson
• Sudeh Cheraghi-Sohi
• Sally Giles
• Stephen Campbell