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Black and minority ethnic group involvement in health and social care research: a systematic review

Dawson, S; Campbell, S; Giles, S; Morris, R; Cheraghi-sohi, S; (2017) Black and minority ethnic group involvement in health and social care research: a systematic review. Health Expectations 10.1111/hex.12597. (In press). Green open access

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Abstract

BACKGROUND: Patient and public involvement (PPI) in research is growing internationally, but little is known about black and minority ethnic (BME) involvement and the factors influencing their involvement in health and social care research. OBJECTIVES: To characterize and critique the empirical literature on BME-PPI involvement in health and social care research. SEARCH STRATEGY: Systematic searches of six electronic bibliographic databases were undertaken, utilizing both MeSH and free-text terms to identify international empirical literature published between 1990 and 2016. INCLUSION CRITERIA: All study designs that report primary data that involved BME groups in health or social care research. Screening was conducted by two reviewers. DATA EXTRACTION AND SYNTHESIS: Data extraction and quality appraisal were performed independently. Data extraction focused on the level(s) of PPI involvement and where PPI activity occurred in the research cycle. Studies were quality-assessed using the guidelines for measuring the quality and impact of user involvement in research. Data were analysed using a narrative approach. MAIN RESULTS: Forty-five studies were included with the majority undertaken in the USA focusing on African Americans and indigenous populations. Involvement most commonly occurred during the research design phase and least in data analysis and interpretation. CONCLUSION: This is the first systematic review investigating BME involvement in health and social care research internationally. While there is a widespread support for BME involvement, this is limited to particular phases of the research and particular ethnic subgroups. There is a need to understand factors that influence BME involvement in all parts of the research cycle.

Type: Article
Title: Black and minority ethnic group involvement in health and social care research: a systematic review
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/hex.12597
Publisher version: https://doi.org/10.1111/hex.12597
Language: English
Additional information: This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/
Keywords: Black and minority ethnic group, health and social care, patient and public involvement, research
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/1565047
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