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

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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 characterise 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, utilising both MeSH and free-text terms to identify international empirical literature published between 1990-2016.

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 sub-groups. There is a need to understand factors that influence BME involvement in all parts of the research cycle.
Original languageEnglish
JournalHealth expectations : an international journal of public participation in health care and health policy
Early online date15 Aug 2017
Publication statusPublished - 2017


  • Patient and public involvement
  • black and minority ethnic group
  • ,health and social care
  • research


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