In our previous blog post ‘U is for Underrepresented Groups in Mental Health Research – Part 1’, Grace described the causes and implications of underrepresentation of LGBT+ individuals and ethnic minorities in mental health research. Now, she will discuss how these problems may be overcome.
Grace, MSc Student
THE POSSIBLE SOLUTIONS
As part of my placement, I recently spent time speaking to members of the TEDS study to investigate ways to improve diversity and inclusion in mental health research. This is known as Patient and Public Involvement (PPI) and provides an opportunity for researchers to involve members of the public in their research planning and study design. Below, I’ve used quotes from these discussions, as well as existing research, to highlight solutions for improving representation in research.
1. To overcome researcher homogeneity
“Sometimes you don’t wanna feel like you’re talking to an interviewer that has absolutely no clue, you know, what your background is and what your world kind of feels like” – Female/White – Other/Bisexual
When speaking to TEDS twins, it was clear that researchers need to be visible allies for marginalised communities and acknowledge the limitations of their own understanding. Previous research has already illuminated the importance of cultural competence (Brown et al., 2014). This requires researchers to adapt their working style to the cultural needs, values and expectations of their participants (Argyriadis et al., 2022), and commit to the interests of marginalised groups. In conjunction, researchers from diverse backgrounds who can offer accurate knowledge about culturally sensitive topics should be hired to improve the success of research teams (Ogunkoya, 2021). Diversity and inclusion bring new and varied perspectives to the table, promote cultural competence, and produce more interesting and better-quality research. Most importantly, it increases representation for marginalised groups, builds trust between members of the public and researchers, and helps to break down the barriers in academia.
2. To overcome systematic exclusion
“if you’re not talking to the group…you’re more likely to do things and say things and create research that then actively works against that group” – Gender undefined/White/Queer
This problem is more difficult to solve as it is linked to wider societal systems. Several methodological adaptations may be made such as providing multi-lingual study materials, using probability sampling (a form of random sampling which ensures that everyone from a selected population has a non-zero chance of being selected into a sample) or creating targeted recruitment strategies (as discussed further by NHS England, (2023)). However, PPI can be a useful tool to ensure research is relevant and accessible to people from all backgrounds, particularly those who are underrepresented in research. In PPI, researchers discuss topics such as science, research agendas and ethics with members of the public (NIHR, 2023). In doing so, the voices of marginalised groups are amplified, systematic exclusion from studies is reduced, and diverse perspectives are introduced. The TEDS twins identified many benefits of participating in PPI, including contributing to social change, learning new skills and advancing understanding of issues in their community. However, it is essential that there are substantial and tangible benefits for participants to prevent tokenistic use of their time (Haldane et al., 2019).
3. To overcome mistrust
“…but I think realistically, looking at the state of the world, if we want it to get better, we have to find the-, have the difficult conversations.” – Female/Black/Heterosexual
Developing equitable partnerships through PPI is essential to building trust between researchers and marginalised communities. Researchers in positions of power must commit to continually addressing the power imbalances between the ‘researcher’ and the ‘researched’ (Scholz et al., 2021). This is necessary to change the negative perceptions of researchers within the eyes of potential participants. This can be supported with outreach work to better understand the community’s desired outcomes, provide education about the risks and benefits of participating in research, and gain endorsement from influential community stakeholders who can advocate for the research in their communities.
In summary, to ensure that research is representative to all, researchers must develop cultural competence, practice active allyship and create equitable partnerships through PPI and outreach work to help amend relationships between researchers and marginalised groups. The most important place to begin this work is by creating greater diversity in researchers themselves, something that is a priority within the EDIT lab.
References
Argyriadis, A., Patelarou, E., Paoullis, P., Patelarou, A., Dimitrakopoulos, I., Zisi, V., Northway, R., Gourni, M., Asimakopoulou, E., Katsarou, D., & Argyriadi, A. (2022). Self-Assessment of Health Professionals’ Cultural Competence: Knowledge, Skills, and Mental Health Concepts for Optimal Health Care. International Journal of Environmental Research and Public Health, 19(18), Article 18. https://doi.org/10.3390/ijerph191811282
Brown, G., Marshall, M., Bower, P., Woodham, A., & Waheed, W. (2014). Barriers to recruiting ethnic minorities to mental health research: A systematic review. International Journal of Methods in Psychiatric Research, 23(1), 36–48. https://doi.org/10.1002/mpr.1434
Haldane, V., Chuah, F. L. H., Srivastava, A., Singh, S. R., Koh, G. C. H., Seng, C. K., & Legido-Quigley, H. (2019). Community participation in health services development, implementation, and evaluation: A systematic review of empowerment, health, community, and process outcomes. PLOS ONE, 14(5), e0216112. https://doi.org/10.1371/journal.pone.0216112
NHS England. (2023). Increasing diversity in research participation: A good practice guide for engaging with underrepresented groups.
NIHR. (2023). What is Patient and Public Involvement and Public Engagement? —NIHR School for Primary Care Research. https://www.spcr.nihr.ac.uk/PPI/what-is-patient-and-public-involvement-and-engagement
Ogunkoya, S. (2021). Improving the Experience of Community Mental Health Services for Black, Asian and Minority Ethnic People in Tower Hamlets, Newham and City and Hackney.
