Written by Camilla Rossi, Jo Blodgett, Chandrika Kaviraj, and Aradhna Kaushal
The way we research health matters. Despite a growing awareness of stark health inequities across the UK, most health research does not involve people from ethnic minority groups. This under-representation not only hides the experiences of those who are often most at risk of poor health, but it also prevents appropriate solutions from being developed. Through a UCL Research Culture Award, we organised a co-production workshop in London to better understand what might prevent equitable participation in health research and how to start addressing these barriers.
The workshop was held in June 2022 at UCL and brought together a group of six participants who identify as ethnic minorities. The activities developed around two main sessions: in the morning, the group brainstormed potential barriers to participation and discussed when they might emerge; the afternoon was dedicated to considering how they could be addressed, discussing the practicalities of involving people from different ethnic minority communities.
The project was informed by the notion of ‘knowledge co-production’. Through this approach, the researchers step back from their traditional role as ‘experts’ to make space for lived experiences as central forms of expertise. One of the ways we did this was by designing the workshop in collaboration with a member of the public, Chandrika Kaviraj. Chandrika reviewed and informed our initial proposal and is now overseeing the analysis and communication of the findings.
What is preventing equitable participation in health research?
Drawing from their families and their personal experiences, the participants identified a variety of potential barriers which we grouped under three main categories.
Lack of trust in institutions and their representatives emerged as a key underlying theme. Participants discussed the effects of “previous negative experiences”, “fear” of institutions and of the repercussions of getting involved, and shared a general perception that medical professionals and researchers are not trained to engage with racism and the trauma it causes:
“My mom would have so much to add to and learn about health research, but she is so deeply scared of institutions because of how she has been treated in the past.” (British Asian, male, 18-29)
Language and socio-cultural obstacles experienced within the health sector were identified as often concurrent, leading to a difficulty in communicating and being heard from both a linguistic and cultural point of view. This can contribute to a sense of “being invalid”, “incorrect”, and “uneducated”:
“Due to language barriers, due to feeling like it is something we’re not a part of, and due to doctors not understanding the cultural context … this leads to an inability to express.” (Black British, female, 40-49)
Practical barriers contribute to people perceiving health research as “not doable” or “relevant”. These can include lack of time and childcare needs, as well as the use of technology and the location of the study.
It is important to stress that the term ‘ethnic minorities’ includes a highly varied population, with ethnicity being only one of the many social categories shaping personal and social identity: different barriers might be more or less relevant to certain individuals or communities depending on factors such as gender, age, disability, or socioeconomic status. Engaging with this diversity and fluidity of experience is essential to avoid simplistic representations which may end up reinforcing the very barriers we are trying to dismantle.
What are the possible solutions?
Participants agreed that all barriers are exacerbated by researchers’ lack of knowledge and engagement with communities. This leads to research methods that do not fit with people’s lived experiences and needs.
The group developed four main recommendations.
- Tap into existing community structures
Researchers need to go beyond “traditional means” to make the research meaningful and relatable to people. Engaging with existing community structures and “physically going out there” was highlighted as essential. When the researcher has no existing links with a particular group, the involvement of a community member in the design and development of the project was recommended.
“You need more of a ‘community development mindset’: use the local authorities and look for places where people are already involved. Go out there.” (Black British, female, 40-49)
- Be transparent about the research aims, objectives, and challenges
The aims and objectives of the research needs to be communicated with clarity and transparency from the beginning: how can the research add value to their communities, families, society? What impact could it have and what are the limitations? Participants agreed that being transparent about the potential challenges involved might help to build trust, making researchers easier to relate and resonate with:
“These communities can smell fraud from miles: be honest about the barriers involved, we can relate to your constraints! If you manage people’s expectations, they will respect you more.” (Black British, male, 50-59)
- One size does not fit all: make the project flexible and adaptable
Investing time and resources into tailoring the research process was highlighted as essential both to encourage people to participate and ensure that they are not forced to drop out. Participants recommended advertising the study through different means of communication, both online and offline, hosting the study in safe and inclusive spaces, dedicating ample space for questions, and being ready to allow time, space, and support for participants struggling to commit for personal reasons:
“Show support and availability, the whole process needs to be more adaptable, flexible, and caring… which also means labour intensive!” (British Asian, male, 18-29)
- Bring the results back to the communities
Confining the research findings to academia can widen the gap between participants and the researcher, discouraging people from taking part in future studies. Instead, diversifying how research is communicated, including accessible reports and in-person presentations within community settings, could contribute to strengthening trust and generate new opportunities for engagement:
“The research needs to get back to the public who participated, they cannot be forgotten. Otherwise, they won’t participate again, and mistrust will continue.” (Black British, female, 40-49)
The results of this project will be written up for publication in the coming months with plans to disseminate the findings widely across UCL, and beyond and to embed the learnings into relevant courses and teaching practices.
If you are interested in finding out more about this project or would like to be kept informed about future development – please email email@example.com