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

Abstract

BackgroundPatient 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.ObjectivesTo characterize and critique the empirical literature on BME‐PPI involvement in health and social care research.Search strategySystematic 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 criteriaAll 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 synthesisData 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 resultsForty‐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.ConclusionThis 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.

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process

“… Systematic reviews: Three systematic reviews including an Australian‐based review on barriers to the participation of socio‐economically disadvantaged groups in health research and strategies on how to increase engagement . The second was a UK‐based review focused on black and minority ethnic group‐PPI involvement in health and social care research . A UK‐based evidence synthesis was the third review concentrated on health and social interventions for inclusion health for people with experiences of homelessness, drug use, imprisonment and sex work …”

“…Providing ongoing education to researchers that includes the active involvement of community partners was stressed. This was seen as important to enable a shared understanding of the broader contexts for which the research is being undertaken . 44 The use of innovative and flexible modes of engagement was also identified .…”

“…This was seen as important to enable a shared understanding of the broader contexts for which the research is being undertaken . 44 The use of innovative and flexible modes of engagement was also identified . 45 Providing pathways to accredited education was noted in four documents .…”

“…Being present with community partners and ensuring feedback is ongoing as agreed with community partners were identified in the reference panels. Ensuring engagement and outputs are flexible and innovative emerged in most of the literature and in the reference panels …”

Participatory implementation research in the field of migrant health: Sustainable changes and ripple effects over time

“…This is particularly the case with groups such as migrants who traditionally are underrepresented in PPI and in decision making in primary care. 17 It has the capability to engage participants in a collegial, inclusive and active processes. This enables their authentic perspectives to emerge clearly in research outcomes.…”