Published: 21 July 2022
Ria Sunga, Research and Engagement Associate at Egality Health; Davine Forde, Associate at Manchester BME Network CIC; Kirit Mistry, Chair of South Asian Health Action and Silvia Bortoli, NIHR Senior Public Involvement Manager, outline the steps researchers can take to build trust and improve ethnic representation in health and social care research.
There is a shift in efforts to increase diversity in health and social care research. This includes NIHR’s commitment to promoting equality, diversity and inclusion and specific work like the Race Equality Framework. Focusing on ethnic diversity, community leaders have stressed the need for ‘stepping stones’ to building trust and better relationships to improve ethnic representation in research involvement, engagement and participation. We know there is underrepresentation in health and social care research and this affects all of society. It is a complex issue with many layers to peel back to understand the gap between the research community and ethnic minority groups in the UK.
In the latest NIHR Necessary Conversations workshop, held in partnership with Egality, Manchester BME Network CIC and South Asian Health Action (SAHA), working with community organisations to improve diversity was at the core of our discussions.
One of the biggest challenges researchers and involvement professionals face is how to work with new communities. Two important factors are at play here:
First, mistrust in the health and social care research sector remains a crucial factor that prevents many diverse communities from participating, engaging, and getting involved in projects. They do not feel represented or listened to. Building trust also means tackling the historical discrimination that has existed in the healthcare system for many groups in British society. Though there is no one-size fits all approach to address this; it is imperative to listen to and work with diverse communities.
Second, it is challenging for many researchers to build relationships with diverse communities and inform them of research that is taking place. When asked if they’ve been involved in health research, people from diverse backgrounds respond that they do not know how research takes place where they live. We need to ask ourselves: how do we do things differently? How do we engage and involve people who have previously been excluded from health and social care research? These are our suggested solutions:
Diverse communities are not ‘hard to reach’ but ‘easy to ignore’
Researchers need to challenge the notion that diverse communities are 'hard to reach' by reflecting on how they can better engage communities. One starting point is to reflect on current engagement and outreach practices and make these better. Get to know the local community, or find out where the communities they need to work with are located and reach out to community organisations. They bring a wealth of expertise and experience in engaging underrepresented groups in health programmes and research for years.
Co-production, co-design and collaboration from the research design stage
This is key to better engagement practices. Including diverse communities and those with lived experiences in the planning stages can build better relationships and trust. It also creates a safe space for them to be able to be heard, valued and treated equally, so they feel they're part of that team from the very beginning. In the Collaboration for Change project, for example, Egality, Manchester BME Network and SAHA formed part of a cohort of 13 partners. Each had a say in the direction of the project, and the lived experiences of community organisations were at the heart of the project.
Communicating research in a meaningful and culturally sensitive way to improve engagement.
Translated documents and videos or podcasts in different languages of a Patient Information Sheet, for example, are essential for reaching people with limited English. These explain and inform them about the project and how they can participate. Simple translations, however, are not enough. Scientific terminology and academic jargon are not easily understood by those outside the research community. How the messages inform, promote and explain the project to local communities can make a difference. Community organisations can provide insights on how best to reach and engage their communities.
While turning to community organisations can help increase diverse voices in research and involvement, one question remains pertinent: do our own organisations, including our workforce, reflect diversity? It all begins with an honest conversation about diversity in all parts of the health and social care research sector.
We have to ensure that community organisations and those with lived experience are involved at the planning stages of research projects, as co-applicants and co-investigators.
We want to know more about how researchers and involvement professionals are increasing diverse ethnic representation in their work. Get in touch with us and continue the conversation: firstname.lastname@example.org. We’ll continue to discuss more on partnering with community organisations to increase diversity in health and social care research in Autumn 2022.