Healthwatch Essex’s recent evaluation of the Research Engagement Network (REN) programme, launched by the NHS Mid and South Essex Integrated Care Board (MSE ICB), reveals a promising model for engaging underserved communities in health and care research.
Why does inclusive health research matter?
In the past, health research across the UK has disproportionately failed to include voices from ethnic minority groups, economically disadvantaged households, and those with limited access to healthcare. This lack of representation can lead to biased outcomes, resulting in services that do not reflect or serve the full diversity of the population.
What is a Research Engagement Network?
In 2023, the MSE ICB secured funding to facilitate a programme of activities as part of NHS England’s REN development scheme, a national effort to improve the involvement of underserved communities in health and care research. Designed to ensure health research better reflects the needs of all communities, the REN programme allows healthcare services to identify research barriers and better address health inequalities in their local area.
Over the last 18 months, the REN programme in Mid and South Essex has connected with groups who have historically been excluded from research conversations by hosting various activities, engagement and research initiatives.
Healthwatch Essex was commissioned to oversee these activities and evaluate the first phase of the MSE REN programme. A summative report was created, with key findings highlighting how REN can function as an evidence-based model for how we can improve accessibility and inclusion in healthcare research.
Building Trust
Mistrust in healthcare systems, often rooted in negative past experiences or perceived bias, can be a major barrier to research participation. To build trust, the MSE ICB began by developing local partnerships with voluntary, community, faith, and social enterprise organisations, alongside the National Institute for Health Research and NHS integrated care systems. This helped to increase research readiness and engagement with diverse communities at a local level.
Another key strategy involved training ‘Community Champions’, trusted local figures within the community who can educate the public on health research, listen to concerns, and co-design relevant outreach activities. From faith-based outreach in mosques and churches, to coffee mornings and creative workshops, these initiatives bring research into familiar, trusted spaces. Using diverse engagement strategies like this helps to capture the voices of different communities and creates multiple entry points for learning about and getting involved in research.
Breaking Down Barriers
Using community input to identify and understand some of the key barriers to research participation, the following areas of concern were raised:
- Accessibility: Limited transport, childcare needs, and tech literacy made it hard for many people to get involved in research activities.
- Knowledge gaps: Many people were not aware of what health research involved or confused health research with clinical trials.
- Cultural and language barriers: Research methods and materials that did not reflect the cultural norms or languages of participants tended to reduce engagement.
- Fear and mistrust: Concerns about data privacy, researcher bias, and questioning the relevance of studies to their own lives and communities made people hesitant to participate.
Inclusive Methods
Another important insight from the programme was the need to offer people choice. Offering multiple ways to get involved in research, whether online, in person, anonymously, or through guided conversations, can ensure wider participation.
Participants were more willing to engage when research felt relevant to their lives and their community. This calls for research agendas that are co-produced with communities, from designing questions to selecting research methods, researchers can create studies that are truly reflective of the populations they aim to serve.
Recommendations for Moving Forward
Based on Healthwatch Essex’s findings, here are some key takeaways for how we can make healthcare research more inclusive and accessible:
- Invest in trusted community relationships
Train and support community champions, build long-term partnerships with local organisations, and work in collaboration. - Simplify communication
Use simple and clear language, visual aids, and translated materials to ensure everyone can understand and engage with research projects and ensure relevant research opportunities are promoted. - Be transparent and follow up
People want to know why their voice matters and how their input is being used. Address mistrust by providing clarity around research aims and objectives. Close the feedback loop with newsletters, updates, or follow-up events. - Diversify participation formats
Use a variety of research and engagement methods which are flexible, accessible and culturally sensitive to suit different audiences. - Provide incentives and support
Compensation, transport support, and childcare options can significantly reduce participation barriers. Providing technical support can also ensure participants are not digitally excluded. - Prioritise emotional safety
Avoid intrusive methods and offer support for participants when discussing sensitive topics. Ensure that participants feel safe and comfortable and receive fair treatment. - Embed cultural competence into research teams
Train researchers from diverse backgrounds to reflect the communities being studied, ensure cultural sensitivity and awareness of how research barriers can impact different communities.
Final Thoughts
When healthcare research is inclusive and accessible, services are better equipped to meet the needs of diverse communities. With ongoing listening, adaptation, and innovation, research can become a tool not just for knowledge, but for ensuring more communities feel seen, heard and valued in the research process.
Healthwatch Essex’s evaluation of the MSE REN programme provides a blueprint for how we can make research practices more inclusive. The NHS Mid and South Essex Integrated Care Board will use these insights to expand the REN programme and engage more communities in shaping the future of health research.
More Information
This report was created by Project Officer Lily Boag.
You can find our report here. For more information about this project, please contact Lily Boag at [email protected].
If you would like to become involved in the REN project please email, Tina Starling from MSE ICB at [email protected].