May 2024
Since we jointly launched the Pan-Sussex Diversity in Health and Care Research Engagement Network (REN) late last year, 15 people from LGBTQ+, Trans, Non-Binary & Intersex and Minoritised Ethnic groups have received community researcher development training, and conducted a total of 42 community interviews. They 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
On Tuesday 23rd April 2024, we brought the community researchers together with the Trust for Developing Communities (training programme lead), and other community organisations in Sussex for a Celebration Event, to highlight their experiences and achievements.*
Jane Lodge, Deputy Director of Working with People and Communities NHS Sussex, opened the event. She outlined the lack of recruitment to studies for our marginalised communities, and also the lack of studies specifically looking at their unique experiences of the healthcare system.
The community researchers who spoke explained what they learned from their experiences, both about themselves and their communities. They also talked about how their own experiences in healthcare were echoed by those they interviewed. Some community members said they had not engaged in research before because they had never been asked. Many described compounded barriers to participation and said they felt marginalised and discriminated against by the NHS in general. Trust was a key issue.
“People in my community are saying.. what’s this research gonna be used for, what agendas do people higher up have, even if the people we’re talking to might have a positive agenda?”
“The stories I’ve heard from my participants have been really difficult, as all have experienced so much in their lives from their treatment from the NHS… [it’s hard for them]..To try to be positive towards the NHS that has lost years of their lives, and nearly their lives, and also the chances of better health and respect and treatment.”
But they also described narratives of resilience, learning, and overcoming significant challenges.
“I was really grateful to hear that the next phase of this project would include the co-development of future bids with the community researchers. I think that’s really, really important, that the community researchers are involved from the inception of the project and I think I would love to see further opportunities for our community researchers to get involved”.
Partnering community organisations formed a discussion panel and we heard about what the REN meant to them and what they wanted to see next. There was agreement that more space and resources for co-production was needed and we need to do more research on intersectionality.
Attendees got into small groups and brainstormed ideas on how to take forward community research. Participants highlighted the importance of:
- ensuring early involvement of marginalised communities in the creation of research bids to ensure their voices are heard
- looking to communities to provide their own experiences and offer their own solutions
- reforming discriminatory practices and lack of awareness of Trans, Non-Binary & Intersex people's needs and lived experiences
- embedding interpreting and translation into research studies
- engaging councils and social care in community research
- ensuring findings are disseminated back to communities in a way that suits them
Everyone came out of the celebration event touched by what they had heard, and by the resilience and determination of the researchers and their communities. There was an energy in the room to keep pushing to ensure research is relevant and meaningful to communities so that they can be better engaged. Only then can we genuinely start to address health inequalities in health and care services and outcomes.
Detailed reports of the community researcher findings and the wider independent REN evaluation will be available in June 2024.
*The other REN partner community organisations are Diversity Resource International (DRI), Sussex Interpreting Service (SIS), Brighton & Hove Switchboard, The Clare Project, Crawley Community Action, 3VA and Voluntary Action Arun and Chichester. Kent, Surrey & Sussex Clinical Research Network is the REN National Institute for Health & Care Research partner.