The REPRESENT study explored the health and social care experiences of people from ethnic minority and underrepresented communities in the East Midlands, and what would encourage them to take part in health research.
Funded by NIHR ARC East Midlands, the study combined nine focus groups, seven one to one interviews and a national survey of 982 people, carried out in partnership with 10 community organisations. Participants came from African Caribbean, South Asian, Somali, Eastern European, Gypsy, Roma and Traveller, refugee and asylum seeker, and LGBTQIA+ communities, alongside healthcare staff, carers and researchers.
The resources below are free to download and have been developed for health and social care professionals, commissioners, service providers, researchers and community organisations.
Research findings and recommendations
The executive summary sets out the study's key themes: health and social care priorities, the barriers people face when accessing services, and what motivates or discourages participation in research. It also includes recommendations for improving both services and research practice.
An accompanying infographic gives a visual overview of the findings, including the health and social care priorities identified by participants and what services and researchers can do differently.
Key themes
Participants identified language barriers, long waiting times, discrimination and a lack of culturally appropriate information as the main obstacles to accessing care.
They were more likely to take part in research when it felt relevant to their community, was communicated clearly and respectfully, and when findings were shared back with them.
Related publications
- Ekezie W, Cassambai S, Czyznikowska B, Curtis F, O'Mahoney LL, Willis A, Chudasama Y, Khunti K, Farooqi A. Health and social care experience and research perception of different ethnic minority populations in the East Midlands, United Kingdom (REPRESENT study). Health Expect. 2024 Feb;27(1):e13944. doi: 10.1111/hex.13944.
- Ekezie W, Cassambai S, Curtis F, Czyznikowska B, O'Mahoney LL, Willis A, Jeffers S, Abdala R, Butt A, Chudasama Y, Khunti K, Farooqi A. Global insights on the involvement of ethnic minority populations in health and social care research priority setting: a systematic scoping review. J Racial Ethn Health Disparities. 2026 Jun;13(3). doi: 10.1007/s40615-025-02377-x.