“We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach

Abstract

Background Public involvement in clinical translational research is increasingly recognised as essential for relevant and reliable research. Public involvement must be diverse and inclusive to enable research that has the potential to reach those that stand to benefit from it the most, and thus address issues of health equity. Several recent reports, however, indicate that public involvement is exclusive, including in its interactions with ethnic groups. This paper outlines a novel community-led methodology – a community sandpit – to address the inclusion of ethnic groups in public involvement in research, reports on its evaluation, findings, legacy and impact. Methods Through detailed planning – thinking through and taking into account all stakeholders perspectives in the planning and design of the sandpit, relationship-building, co-design and co-delivery between the Public Programmes team based at Manchester University NHS Foundation Trust and the Greater Manchester Black and Minority Ethnic Network - the community sandpit was held in July 2018. Results Fifteen community organisations took part in the two-day event, as well as six researchers, and six creative practitioners. Six community-based partnership projects were seed-funded; four of these received additional funding from other sources also. Conclusions Evaluation of the sandpit showed the format to be well-received by all: it levelled power relationships between community organisations, health researchers and research infrastructure; it developed capacity amongst researchers about the accessibility, role and potential of community organisations. Described as “not another community seed fund” by community partners, the sandpit offered community partners, equitable avenues for collaboration within Greater Manchester translational research and led to the formation of the Black, Asian and Minority Ethnic Research Advisory Group (BRAG Vocal Website information, - https://www.wearevocal.org/opportunities/black-asian-and-minority-ethnic-research-advisory-group-brag/, 2021). The method has the potential to be replicated elsewhere to support inclusive public involvement in research and inclusive research.

Trial Forge Guidance 3: randomised trials and how to recruit and retain individuals from ethnic minority groups—practical guidance to support better practice

“…This guidance is intended to give practical support to trial teams to help them to recruit and retain trial populations that more closely resemble the population that would gain benefit from an effective treatment or initiative. There is some research on the factors that influence trial recruitment and retention of ethnic minority individuals [10,[24][25][26][27][28][29][30][31][32][33][34][35][36][37]40], but those working in trials are greatly limited by the lack of empirical evidence for effective strategies to mitigate these factors. It is a sad fact that at the time of writing there is no strategy in the Cochrane recruitment review [7] or the Cochrane retention review [8] that would definitely help a trial team more effectively recruit and retain ethnic minority participants.…”

“…Trust is not built quickly. A good place for trial teams to start is by building relationships with local community organisations (including faith groups) working with ethnic minority groups in their area [ 10 , 40 ]. These organisations are more likely to have the trust, skills and cultural awareness to engage with members of the communities they serve and can facilitate discussion between those individuals and researchers.…”

‘We go where we know’: Reflections from Mobilizing for PrEP and Sexual Health (MobPrESH) – A peer-led PrEP education programme across England, for and by women and non-binary people

“…The project highlighted the importance of everyday conversations and their ‘ ripple effects ’ beyond narrow, predetermined metrics of success, in addition to more formal health promotion activities. It also challenged the notion of populations that are ‘hard to reach’ 37 and traditional approaches of working with communities grouped by singular dimensions of identity and lived experience.…”

Trial Forge Guidance 3: Randomised trials and how to recruit and retain individuals from ethnic minority groups– practical guidance to support better practice

“…This guidance is intended to give practical support to trial teams to help them to recruit and retain trial populations that more closely resemble the population that would gain benefit from an effective treatment or initiative. There is some research on the factors that influence trial recruitment and retention of ethnic minority individuals 10,[24][25][26][27][28][29][30][31][32][33][34][35][36]37,40 but those working in trials are greatly limited by the lack of empirical evidence for effective strategies to mitigate these factors. It is a sad fact that at the time of writing there is no strategy in the Cochrane recruitment review 7 or the Cochrane retention review 8 that would definitely help a trial team more effectively recruit and retain ethnic minority participants.…”