By Rachele Hendricks-Sturrup
To address the root of both health disparities and community underrepresentation in biomedical research, it is mission-critical to teach early-stage career researchers how to empower underrepresented communities as partners in research while respecting and appreciating local history, context, and values.
As a researcher, I often encounter empirical studies in the literature that explore and experiment with institutionally– (versus community-) derived interventions that are meant to help boost underrepresented community engagement in biomedical research.
What if researchers took more time to intentionally harness their power and training to elevate, empower, and mobilize the voices of the communities they study to help design more impactful engagement interventions?
What if, instead of feeding into boilerplate notions around health disparities and equity research, early career researchers and their mentors empowered themselves, their peers, and underrepresented communities with knowledge and expertise to operationalize intent around addressing health disparities and equity through community empowerment and action?
To illustrate and hopefully inspire the development of more community-focused efforts worldwide, I highlight two examples of biomedical research engagement endeavors in the United States, one of which is my own: 1) an academic and local African American nurse community partnership to develop ethical and actionable strategies to promote stronger African American engagement in precision medicine research to intentionally address health disparities and equity (collectively across two publications, Hendricks-Sturrup, et al.) ; 2) an academic and community-based nonprofit partnership to engage directly with low-income and marginalized communities in Nashville/Davidson County in Tennessee, and provide recommendations for engaging these underrepresented populations in biomedical research (Cunningham Erves, et al.).
Each endeavor presents more than just a documented list of concerns among underrepresented communities engaged, but more importantly, a set of clear, actionable steps that can be translated into policy, research programming, and practice.
The table below illustrates a few examples of where and how, in both studies, community members’ concerns and actionable recommendations seemingly aligned. In these two studies, underrepresented communities were concerned about, among several other matters, 1) personal risks to participation and the responsible conduct of research, 2) effective communication barriers, and 3) cultural competency and humility. Recommendations to address these concerns centered on transparency; creating user-friendly communication tools and safe spaces for communication between researchers and community participants; and cultivating timely, authentic, and person-centered opportunities for engagement.
Table. Underrepresented Community Concerns & Recommendations for Biomedical Research Engagement
|Underrepresented Community Concerns and Recommendations (Key Examples)||Hendricks-Sturrup et al.||Cunningham Erves, et al.|
|Concern #1||Accountability for responsible research conduct.
|Uncertainties of underrepresented populations regarding research participation.|
|Recommendation #1||Discuss historical research misconduct/mistakes before (not after) engagement.||Transparency regarding risks of research to participants and community.|
|Concern #2||Language barriers.
What are effective ways to communicate with patients?
|Ineffective communication about research opportunities and research findings.|
|Recommendation #2||Meet communities and individuals where they are.
Design and provide specific communication/education tools and strategies.
Provide an engaged, knowledgeable, and available point-person for participant support.
Understanding target audiences among African American communities for promoting precision medicine research.
Create a safe setting for dialogue and engagement.
|Establish a line of communication between researcher and community during all phases of research.
Broadly disseminate research opportunities implementing user-friendly strategies.
|Concern #3||Cultural competency in care interactions.
Authenticity in outreach.
|Research teams need training in communication and cultural humility.|
|Recommendation #3||Be culturally competent to foster trust.
Use language that is preferred/understood best by the research participant.
Use language interpreters.
Use native knowledge or geographic region as an indicator of local language.
Account for differences in language translation.
Emphasize the importance of tone and nonverbal communication.
|Distribution of more comprehensive, up-to-date information on clinical research and researchers.
Use of engagement strategies to ensure communications are person-centered.
Even in instances of successful research engagement with underrepresented communities, it is often the case that the resulting long-term social and structural power dynamics between those communities and the researchers remain skewed in favor of the researchers and their institutional partners. Therefore, I question how researchers and their mentors, can accomplish if more resources and support were available to actually meet underrepresented communities where they are.
For example, what if more often early-stage career researchers are be trained to, by default, collect and use data disaggregation methods that can accurately identify the social and structural root of health disparities within pan-ethnic groups? What if all researchers could receive continuing education on the best strategies to leverage properly disaggregated data to draw contextually-relevant conclusions from locally-adapted qualitative and quantitative studies? How can this type of research engagement help promote and transform underrepresented community members’ voices into actionable recommendations that help eliminate social and structural barriers and strengthen biomedical research engagement? How might all of this cause biomedical research to become a tool that can be leveraged to help create scalable products, services, interventions that implemented in a way to intentionally and effectively help reduce, versus exacerbate, health disparities today and sustainably in the future?
Researchers should challenge themselves and their peers to identify engagement strategies to date that demonstrate what it looks like to 1) meet underrepresented communities where they are and then 2) deploy these strategies in their work and document their successes and failures in building active partnerships in biomedical research.
Educating early-stage career researchers on these approaches is more important than ever as biomedical research becomes more globalized. By offering these recommendations, I challenge researchers and their institutions, like the United States National Institute of Health, which recently launched “an effort to end structural racism and racial inequities in biomedical research,” to look inward and determine how they can apply their knowledge, resources, and expertise to help elevate underrepresented community voices and co-create more equitable research ecosystems.
Rachele Hendricks-Sturrup, DHSc, MSc, MA, is a journalist, researcher, and bioethicist whose work centers at the intersection of health policy and innovation. She is @rachelehsturrup on Twitter.