The National Institutes of Health (NIH) Revitalization Act of 1993 mandated appropriate inclusion of minorities in all NIH-funded research. Yet more than 20 years later, vast disparities still exist in cancer research, researchers reported in a session for the inaugural ONS Bridge™ virtual conference.
“Excuses for noninclusion are no longer acceptable,” Deborah Watkins Bruner, RN, PhD, FAAN, senior vice president for research at Emory University, said. “Social determinants of health should be standard variables assessed and analyzed in all clinical trials.”
Social determinants of health are “conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks,” according to Healthy People 2020. They fall into five key determinants:
- Economic stability
- Social and community context
- Health and health care
- Neighborhood and built environment
Specifically, people with lower education, those with lower incomes, those living in rural communities, and those residing in more deprived neighborhoods are at high risk for health disparities in cancer care, Bruner said. She cited research demonstrating that social determinants of health significantly affect access to care, symptom severity, dose reductions and cessation, mortality rates, and more.
Overcome Barriers to Studying Rural Populations
Robin M. Lally, PhD, MS, RN, AOCN®, FAAN, professor at the University of Nebraska Medical Center College of Nursing, said that rural patients with cancer, as compared to their urban counterparts, have higher cancer mortality rates, worse quality of life, greater cancer-related distress, and poorer health status. They also are more likely to retire early after a cancer diagnosis and struggle financially.
Rural patients remain underrepresented in cancer research, Lally said, often because of limitations with long travel distances to study sites. Rural populations also tend to distrust universities and large establishments, worry about confidentiality, fear study participation, and generally lack knowledge about research, she said.
Lally suggested strategies to facilitate studies in rural populations:
- Learn about the community and its politics of care.
- Partner with local clinics, community organizations, and insiders.
- Establish presence and trust.
- Emphasize benefits to community and past participants.
- Use Facebook ads, community pages, local newspapers, shopper publications, and mailed ads.
- Ensure patient confidentiality, including using nondescript envelopes in the mail and vehicles when visiting homes.
- Follow up frequently and persistently.
- Use online interviews, data collection, and interventions (including wearables) when possible.
- Avoid conflicts with worship, community events, and individual obligations.
- Share outcomes with participants.
Improve Decision Making Among African Americans
Multiple studies exploring healthcare decision making among minority men found that rural black men often were not aware of their risk for cancer, placed great importance on family involvement, and needed a trusting relationship with a healthcare provider, Randy A. Jones, PhD, RN, FAAN, professor at University of Virginia School of Nursing, said.
He said healthcare providers should provide a welcoming environment where patients can discuss options in nonmedical jargon, develop culturally sensitive decision-making aids, include family in decision making, and allow frequent contact between patients and nurses.
Strategies he found to be helpful included recruitment efforts through rural community health centers, barbershops, churches, recreational centers, and radio stations. To facilitate trust and comfort, interviews can be conducted in places that are convenient and comfortable for the participants (e.g., home, conference room).