Chandra Char, Ph.D., MPH
Department of Family Medicine
Georgetown University Medical Center
Washington D.C.
Diversity, Equity and Inclusion (DEI) seem to be common terms used in academic settings these days. However, what does DEI mean when it comes to health psychology research? What does it mean to be equitable and inclusive? Equity is an end goal, but it should also inform every stage of the research process, from problem identification, to data collection, analysis, interpretation, and knowledge mobilization. Including marginalized communities at every step of the process as co-investigators and/or collaborators is a key step towards the goal of equity in healthy psychology research and knowledge production.
Community-Focused Work Means Building Relationships with Communities
When working with marginalized communities, the first step is to know the community we want to work with and avoid putting the onus on community members to provide basic knowledge that we can access ourselves through existing data sources (e.g., Census; other population surveys; published literature). Once we’ve done that homework, authentic engagement with community members can help fill in crucial nuances of culture, the people, their neighborhoods, etc. Our efforts will help demonstrate that we respect the time of community members and understand the value of their expertise.
Community engagement goes beyond just reaching out to a community to collaborate. We can engage by showing up for the community. Attend community events and be open to learning from and with the community, not just about them. Recognizing our role as agents of history, our work carries inherent responsibility to engage in research about Black, Indigenous and racialized people, but not necessarily to ensure that the research is for us or by us (Bainbridge & Wallhagen, 2014; Goodman et al., 2018; Martin & Mirraboopa, 2003; Nobles, 1976; Rodney et al., 2023; Scharff, 2010).
Community-led research is key! This means prioritizing community involvement in research methods and study design. Communities should have the agency and opportunity to guide research beyond academic knowledge. For example, community members can offer important insight into culture, behaviors and resources that may not be documented in academic work. These principles are the core to Community-Based Participatory Research (Wallerstein, 2020).
People living with marginalized identities and facing health and social inequities and/or those with specific medical conditions often know more about what it’s like to live with these challenges than researchers do. Close family members, caregivers, and partners can also share deep knowledge and understanding. These individuals are Lived Experience Experts because they are in fact experts in this life (Vázquez et al., 2023).
Analysis Is More than Just Crunching Numbers: We Are Telling a Story about a Community
Language is central to the way problems are framed, research questions are posed and research findings are presented. When reporting research results, researchers should be transparent about how populations have been defined and described, how categories within variables have been created, and the logics/assumptions underpinning these decisions (Ashwell et al., 2023). When it comes to using secondary data for a project, we often don’t have control over the way categories were created or how the item was worded. Describe any limitations of the existing variables, categories and questions. If we’ve chosen to collapse categories, explain our rationale. Cite other studies that have used the same/similar approach.
When coding and analyzing qualitative data, it is important to honor and value lived experiences by using the words and terminology of the communities with whom we are collaborating. The jargon/argot specific to a community can also convey important meaning and nuance. Using direct quotes to define themes or codes is one way to embed a community’s language and culture in our research. Lived experience is invaluable—honor it!
Race and racism should not be considered in isolation or reported alone and should be accompanied by other sociodemographic factors and social determinants. Acknowledge the intersectionality of race and ethnicity by providing these other factors (Ashwell et al., 2023). This approach acknowledges the role of structure, environment, power and privilege in a study. It could be as simple as framing questions and results in a more equitable way. For example, instead of offering categories for race and ethnicity questions, we can simply ask “How do you identify your race and ethnicity?” Framing the question in this way allows the participant to present as their authentic self without having to force themselves into a predetermined category.
Understand that there are historical sensitivities and controversies related to the language used to describe race/ethnicity and associated terminology (Ashwell et al., 2023). For example, historically, there have been toxic relationships between communities of color and medicine. Acknowledging this history and working to prove ourselves to be trustworthy and genuine when engaging with communities and recruiting participants for studies is impactful (Wallerstein, 2020).
Disseminating Results in Accessible & Plain Language
As our health psychology research practices evolve, and communities continue to assert their rights and interests in research focused on their populations, so will guidance. We want to ensure we stay abreast of the most effective ways of presenting results. Particularly when working with marginalized populations, we want to ensure that we are presenting research findings in an inclusive and equitable manner (Flanagin et al., 2021). Recommendations also include that language and terminology must be accurate, clear, and reflect fairness. The goal of this guidance published in JAMA Network is to reduce unintentional bias by using plain language in scientific writing and publications (Flanagin et al., 2021).
Using plain language is helpful for everyone, regardless of education level or English proficiency. It removes the scientific jargon and makes it simple for everyone (community members, service deliverers, policy actors) to understand (Plain Language Association International, 2023). One of the fundamentals of plain language is audience and purpose. Our audience, whether it be readers of a blog, policy statement or journal publication, will be different for each type of communication. Additionally, it is important to use terminology that communities use; sometimes these terms may not be the same terms we use in academic work.
Recognizing OUR Power & Privilege
Regardless of our background, as academic degree holders (bachelor’s, master’s, doctorate, etc.) we have a level of privilege that makes us closer to the center of power than the communities we engage with. Awareness of our positionality is essential in beneficence. The moral of the story is that we all have muscles to build when it comes to DEI in research. Small, continuous moves forward will help us reach institutional and community goals of equity.
Next Steps for Enhancing DEI in Research
Practice reflexivity: Reflexivity goes beyond self-reflection and acknowledges our intersecting identities, marginalized and privileged, moving into a space of self-implication (Jones, 2010). Reflexivity is an essential step in engaging deeply with the complexity of our identities which leads to coalition building, activism, and social change (Jones, 2010). An overall humble and open approach to learning is always meaningful when engaging with communities.
We all have muscles to build when it comes to DEI and health equity in health psychology research. Approach communities and research with a humble heart. It is important to remember that making mistakes is part of the learning process of DEI in research.
References
Ashwell, S., Baskin, P., Christiansen, S., DiBari, S., Flanagin, A., Frey, T., Jamison, R., & Ricci, M. (2023). Three recommended inclusive language guidelines for scholarly publishing: Words matter. Learned Publishing, 36(1), 94–99. https://doi.org/10.1002/leap.1527
Bainbridge, K. E., & Wallhagen, M. I. (2014). Hearing loss in an aging American population: Extent, impact, and management. Annual Review of Public Health, 35(1), 139–152. https://doi.org/10.1146/annurev-publhealth-032013-182510
Flanagin, A., Frey, T., & Christiansen, S. (2021). Updated guidance on the reporting of race and ethnicity in medical and science journals. JAMA Network, 326(7), 621–627. https://doi.org/doi:10.1001/jama.2021.13304
Goodman, A., Morgan, R., Kuehlke, R., Kastor, S., Fleming, K., Boyd, J., & Society, W. A. H. R. (2018). “We’ve Been Researched to Death”: Exploring the research experiences of Urban Indigenous Peoples in Vancouver, Canada. The International Indigenous Policy Journal, 9(2), Article 2. https://doi.org/10.18584/iipj.2018.9.2.3
Jones, R. (2010). Putting privilege into practice through “Intersectional Reflexivity:” Ruminations, interventions, and possibilities. Reflections: Narratives of Professional Helping, 122–125.
Martin, K., & Mirraboopa, B. (2003). Ways of knowing, being and doing: A theoretical framework and methods for indigenous and indigenist re-search. Journal of Australian Studies, 27(76), 203–214.
Nobles, W. (1976). Extended self: Rethinking the so-called Negro self-concept. Journal of Black Psychology, 2(2), 15–24.
Plain Language Association International. (2023). What is plain language? plainlanguagenetwork.org
Rodney, R., Hinds, M., Bonilla-Damptey, J., Boissoneau, D., Khan, A., & Forde, A. (2023). Anti-oppression as praxis in the research field: Implementing emancipatory approaches for researchers and community partners. Qualitative Research, 14687941231196382. https://doi.org/10.1177/14687941231196382
Scharff, D. (2010). More than Tuskegee: Understanding mistrust about research participation. Journal of Health Care for the Poor and Underserved, 21(3), 879–897.
Vázquez, E., Kim, M., & Santaella, M. E. (2023). Lived experience experts: A name created by us for us. Expert Review of Hematology, 16(sup1), 7–11. https://doi.org/10.1080/17474086.2023.2178410
Wallerstein, N. (2020). Commentary on community-based participatory research and community engaged research in health for Journal of Participatory Research Methods. Journal of Participatory Research Methods, 1(1). https://doi.org/10.35844/001c.13274