“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 recognized as essential for relevant and robust 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 careful planning, 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: 15 community organisations took part in the participatory 2-day event, as well as 6 researchers, and 6 creative practitioners. 6 community-based partnership projects were seed-funded; 4 of these carried on to receive additional funding.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 equitable avenues for collaboration within Greater Manchester translational research and led to the formation of the Black, Asian and Minority Ethnic Research Advisory Group. The method has the potential to be replicated elsewhere to support inclusive public involvement in research and inclusive research.

Understanding who is and isn’t involved and engaged in health research: Feasibility of capturing and analysing demographic data related to patient and public involvement and engagement within a clinical translational research environment

“…3). We attribute the relatively high levels of contribution from people of Asian, African and Caribbean heritage, to our strategic focus on increasing inclusion in PPIE within these populations over the last 5 years, including initiatives such as the community sandpit [24] and BRAG [25].…”