“As we think about what scientific integrity means, what it means to do good science – really at its foundation – (we must) think critically about bringing principles of inclusion into the work that we do,” said Monica Lemmon, MD, in her opening remarks at the December Virtual Research Town Hall. Populations that are underrepresented in research often lack access to health innovations and healthcare that meets their specific needs. The expert panel of speakers present for this discussion all emphasized that greater inclusion leads to both better research and more equitable outcomes.
Keisha Bentley-Edwards, Ph.D., Associate Professor in Medicine with the School of Medicine, spoke on barriers to access, and how prior medical misconduct has influenced the Black community’s distrust of medical research and treatment. A long history of experiments that benefited white individuals at the cost of people of color has had a lasting impact on the Black community’s relationship to medicine and may underlie hesitancy with research participation. When recruiting, it is vital that researchers understand this sociohistorical context, acknowledge the historical inequities, and prioritize inclusion in research. Racism is not just a historical issue, and it has important effects that impact the current medical care of Black individuals. “If you are not actively considering inclusion, you are passively excluding populations,” Dr. Bentley-Edwards pointed out. When researchers are designing experiments and plans for participant recruitment, they must plan to actively recruit people of color in all studies, not only those studies with an explicit focus on minority health. Everyone deserves access to innovation, and by excluding people of color from clinical trials we are greatly limiting our understanding of their specific healthcare needs. More information can be found at Duke’s Center for Equity in Research website, and interested parties can also fill out a request for an EIR Consolation.
Kenisha Bethea, MPH, Research Program Leader with the Duke Clinical & Translational Science Institute, gave an overview of the programs and services offered by the Community Engaged Research Initiative (CERI). The mission of CERI is to facilitate equitable, authentic, and robust community-engaged research to improve health and health equity. She highlighted that seeking community input early is crucial to inclusion of the community in research. This early input helps identify health priorities and potential health inequities in the community. Engaging the community can help to increase participation in underrepresented populations not just as participants but as partners. These partnerships can provide opportunities to educate community members on the importance of ongoing research and help them feel empowered in their engagement. One of the biggest barriers to research equity is people simply not being asked to participate. Increasing communication between researchers and the community can help foster trust and sustain long-lasting relationships. She ended her talk with a reminder that “Most important of all, at the root of community engagement is customer service. So, if you treat people the way that you want to be treated, you show respect and humility, that will bode a long way in not only creating and developing relationships, but in sustaining relationships over time.” More information on resources and services offered by CERI can be found here.
Christina Kline, JD, Executive Director with the Duke Disability Management System, discussed the inclusion of individuals with disabilities in research. She highlighted the various models for thinking about disability, including legal, medical, and social. For some individuals, a disability is an identity, not just a medical definition. It is important to keep these different models in mind when working with individual people and to not reduce disabilities to simply the medical definition. The CDC estimates that one in four individuals has a disability, highlighting the importance of including this large population in research. She encouraged researchers to think about principles of Universal Design when creating research projects. Universal design is intended to create spaces and programs that allow as many people as possible to have access without requiring additional accommodations or modifications. There should also be clearly communicated opportunities to request reasonable accommodations. She encouraged researchers to both prioritize recruitment of individuals with disabilities and clearly convey the accessibility of various research projects when advertising. For more information or guidance in making your research project more accessible, please reach out to either the DMS office at DMSOffice@duke.edu or contact Christina directly at Christina.d.kline@duke.edu.
Stephanie Hart, Ph.D., Clinical Associate and Post-doctoral scholar within the National Clinician Scholars Program, shared strategies for reaching and collaborating with rural populations. Rural populations experience significant health disparities compared to urban populations and are much less likely to be involved in clinical research opportunities. Barriers to rural residents’ participation in research include research mistrust, geographic isolation, lack of health care infrastructure, lack of opportunities and awareness of the benefits of research, and lack of sustainable community partnerships. She highlighted the importance of research team diversity and inclusion of team members who identify similarly to those from rural areas. This helps to ensure the work undertaken is relevant to the target population and/or rural community. “One of the most important things I have learned in the last 20 years is about the value of community partnerships and how the principles of community engagement really underlie best practices for collaboration and participation of rural communities in research,” she emphasized. She ended by sharing resources for defining what we mean by rural and tips and tools for interacting with these communities.
Dr. Barret Bowling, M.D., Association Professor in Population Health Sciences in the School of Medicine, provided information on the 5Ts framework to support inclusion of older adults in research. Older adults (age 65 and older) account for 33% of all physician services spending and 40% of inpatient admission, but only account for 10-20% of research study participants. This disparity clearly highlights the need for more research focused on the patients who need it the most. NIH policies state that people of all ages, including older adults, must be included in all human subjects’ research unless there is a valid scientific or ethical reason to exclude them. The 5Ts framework was developed based on input from both researchers and older adults in the community. The first T is targeting populations, which involves having knowledge about the “at risk” or “real-world” populations your research should be designed to include. Next is teams, highlighting the need to build and train research teams that have knowledge about these populations. Time involves being flexible, setting the right pace for your project, and limiting time requirements for subjects to make participation more accessible. Tips to accommodate requires following practical tips to facilitate recruitment, retention, and meaningful participation. And lastly tools encourages the use of helpful aids, study materials, and measurement outcomes that are important to the demographic you are trying to include. More information on the 5Ts framework can be found here.