Background The aim of this project was to work in partnership with people living with neurological diseases, from backgrounds that are racially minoritised in the UK, to co-produce a research recruitment strategy. Their experiences living with a neurological disease were vital to the co-production, plus their deep understanding of their community, culture and factors impacting engagement. Methods Six patient partners agreed to participate in three workshops that aimed to explore experiences of research, barriers and community concerns, culminating in ideas for strategies and actions to address the challenges. Results Workshop 1 identified key issues around knowledge, communication, trust, shame and personal choice. Discussion and consensus in workshops 2 and 3 resulted in eight strategy areas: (1) Access to specialist clinics, (2) Setting up Patient and Public Involvement groups for specific studies or programmes, (3) Access to information on research, (4) Accessible and attractive information, (5) Incentives for participation in research, (6) Involving family members in decisions on research, (7) Communicating research outcomes and (8) Cultural sensitivity and diversity in the research team. Conclusions The process of co-production formulated a strategy to promote engagement and increase ethnic diversity within the context of neurological disease research. Modification and refinement for other areas and contexts is recommended, in partnership with people who live with the day-to-day experiences of specific diseases.
Ramdharry et al. (Thu,) studied this question.