Cancer

Oct. 10, 2024

Cancer research is crucial for advancing the prevention, diagnosis and treatment of disease, but it often fails to reflect the diversity of the communities it serves. Clinical trials have historically underrepresented racial and ethnic minority groups, as well as other groups such as people in rural populations, older adults, and people with low incomes. This leads to a diversity deficit, where the benefits of research are not equitably distributed among all people affected by cancer.

"The inequity in clinical trial participation produces trial demographics that are not representative and thus perpetuate health disparities in marginalized racial and ethnic communities," says Folakemi T. Odedina, Ph.D., deputy director for community outreach and engagement at Mayo Clinic Comprehensive Cancer Center.

Overcome disparities with community-engaged research and clinical trials

Click for an infographic about best practices for and addressing barriers to community-engaged research.

One way to address this gap is to engage the community in the research process, from identifying the problems to designing the solutions. Community-engaged research is an approach that involves meaningful collaboration between researchers and community members. This process can help researchers understand the barriers that affect the participation and retention of diverse populations in clinical trials, as well as the acceptability and effectiveness of the interventions.

However, community-engaged research has its challenges. It requires a significant investment of time, resources and trust from both researchers and community partners. It also requires a shift in the culture and norms of academic research, which may not always value the input of those who are not experts or reward efforts to engage the community. Moreover, researchers must adhere to ethical principles and practices that respect the autonomy, dignity and rights of the community members, especially those who are vulnerable or marginalized.

See the infographic, The Diversity Deficit, for best practices and strategies for community-engaged research. By following these steps, researchers can leverage the strengths and insights of the community to enhance the quality and relevance of their research, foster trust and empowerment among the community members, and increase awareness of and access to cancer care services.

For more information

Odedina FT, et al. Community engagement strategies for underrepresented racial and ethnic populations. Mayo Clinic Proceedings. 2024;99:159.

Refer a patient to Mayo Clinic.