In Autumn of 2023, SIS was invited to join the Pan-Sussex Diversity in Health and Care Research Engagement Network (REN) to work alongside partners from the NHS, Universities and VCSE to create a regional network of diverse Community Researchers who could support Sussex-based health and care research. To build the capacity of Community Researchers through development training and then engage people with a shared lived experience to investigate how to improve their participation in health and care services and research.
15 people from LGBTQ+, Trans, Non-Binary & Intersex (TNBI) and Minoritised Ethnic groups received Community Researcher development training, and conducted a total of 42 community interviews. This cohort included SIS Linguists Lai Lai Wu (Mandarin and Cantonese Speaker) and Meryam Ejjia (Arabic and French Speaker). A wonderfully powerful video of their experience has been produced which highlights why they joined the programme and the impact it has had on both them and the participants they interviewed.
The Community Researchers focused on:
- Experiences and perceptions of the NHS
- Accessing health and care information
- Awareness and understanding of NHS Health and Social Care Research
- Views on participation in research
The Research Final Paper has now been published. The key findings include
- the need for research teams to consider how negative experiences and perceptions of marginalisation, impact engagement in health and care research
- ensure translation and interpreting support is included in all health and care
- adopt a co-creative approach at the early stages of planning a research study to cover topics that are important to local communities
- make marketing and communication materials for research reflect a broad demographic profile, enabling potential respondents to see themselves represented
It was also made very clear the benefits of using Community Researchers from the same community
‘’Yes it will be great to do it and you’re honest; I feel comfortable more because of the language; we came from the same cultural background, you understand me more because you [are] like me, and your experience like me, and I feel you’re not judging me.”
‘’Feeling we understand each other, the language, safe and secure, confidence to talk, trust. I know you have been through the same experience, and you understand my problems more and understand my feelings, and you have the cultural awareness.”
A celebration event at the end of this first phase, brought the Community Researchers together with and other stakeholders in Sussex to highlight their experiences and achievements.
The REN partnership has been successful in securing further funding to continue this important work. We are also working together to identify other opportunities to apply Community Research methods and support on going health research initiatives.
