Cancer Research Belongs in the Community
Studies have shown that cancer disproportionately impacts racial and ethnic minority groups, however, these groups remain underrepresented in cancer clinical trials.1,2,3 With unique insights into issues facing underrepresented patient populations, the Association of Community Cancer Centers (ACCC) recently developed consensus-driven recommendations to improve diversity, equity and accessibility in cancer research.
The recommendations were released as part of an executive summary report from the ACCC Community Oncology Research Institute (ACORI) Call to Action Summit, a virtual event that brought together more than 120 stakeholders representing oncology programs and practices, research teams and networks, patient advocates, trial sponsors, industry representatives and regulatory agencies.
“The ACORI Summit jumpstarted critical conversations on health equity in cancer care research, including the roles—and responsibilities—oncology programs and practices have to carry out equitable and accessible research,” said ACCC Immediate Past President Krista Nelson, MSW, LCSW, OSW-C, FAOSW. “But the most important message we heard was the need to bring the patient and community perspectives into the research process.”
Addressing Barriers to Clinical Trial Equity
Among other recommendations, the ACORI report asks industry sponsors and others involved in trial design to actively identify and partner with oncology programs serving understudied and underserved patients. It also outlines key action items for oncology programs:
- Understand the unique needs of their communities, barriers to research participation, and community resources that can help improve trial enrollment and retention.
- Engage directly with patients and caregivers to embed their experiences and perspectives in the research process.
- Build capacity to conduct equitable and patient-centered research.
Randall A. Oyer, MD, is medical director of the Ann B. Barshinger Cancer Institute and Oncology Program at Penn Medicine Lancaster General Health and a past president of ACCC. He said community oncology programs and the patients they care for both face challenges ensuring that racial and ethnic minorities and other underserved populations are well represented in the clinical trial ecosystem.
“Community cancer centers may find it difficult to fit clinical trial screenings and discussions into their very busy clinical workflow,” he said. “Moreover, their staff may lack adequate training and resources to identify open trials that match the wide range of cancers they care for.”
He added that underserved patients – including racial and ethnic minorities – have imposed barriers, including lack of adequate health insurance (underinsurance) and difficulties in traveling to the academic medical centers where most trials take place.
“Clinical trials must be vetted for safety and effectiveness in patient populations intended to receive the medication or therapy,” he said. “When minority groups are not well represented in clinical trials, we don’t get to learn about how they fare according to important metrics such as dosing tolerance, side effects and outcomes. Therefore, those patients may not experience the results reported in the trial when following that therapy.”
Community Oncology Programs Take Action
Dr. Oyer expanded on the ACORI action items, noting that multiple initiatives are crucial to providing individual patients with equitable, high-quality cancer care – including participation in cancer treatment trials.
“When we involve the communities in which patients live, we have a better understanding of what those patients need,” he said. “It also helps create a level of trust among patients and care teams and provides a level of support to help patients manage their care. Patients and their caregivers must be at the center of the entire process so they can inform care teams of their needs and experiences in the medical care system as a whole and with their treatment.”
He added that the commitment to equity must start at the top, with clinic leadership providing the appropriate resources, building structured Diversity, Equity and Inclusion (DEI) programs and holding their programs accountable for transparency around health equity outcomes.
At Penn Medicine, where Dr. Oyer practices, leadership clearly communicates the organization’s DEI goals, from hiring practices to setting and publishing research inclusion goals. The clinic also takes a race- and ethnicity-blind approach to trial screening.
“We base trial screening on a patient’s specific type of cancer and specific stage rather than making assumptions about their trial participation based on race or ethnicity,” he said. “At the same time, we construct support systems that make it possible for all patients to enroll in and complete the trial.”
While Dr. Oyer said he is encouraged by the inclusivity actions being taken by community cancer clinics, he encourages patients to advocate for themselves as well by seeking information about clinical trials from their physicians and organizations like ACCC.
“Ask your doctor if there’s more you should know about your cancer – if there’s a clinical trial available,” he suggested. “Clinical trials are a key part of high-quality cancer care and with the development of treatments targeted to specific molecular and genetic anomalies, trial participants have up to a 50 percent chance of positive response. In many cases today, clinical trials are a patient’s best first option instead of a last option.”
About the ACCC and ACORI
The Association of Community Cancer Centers (ACCC) is the leading education and advocacy organization for the cancer care community. Founded in 1974, ACCC is a powerful network of 28,000 multidisciplinary practitioners from 2,100 hospitals and practices nationwide. As advances in cancer screening and diagnosis, treatment options, and care delivery models continue to evolve – so has ACCC – adapting its resources to meet the changing needs of the entire oncology care team. For more information, visit accc-cancer.org.
ACORI, the research arm of ACCC, was created in 2021 to close the gap in cancer research by establishing clinical trials as a standard of care in treatment plans and to help achieve equitable cancer care delivery for all patients. To do so, ACORI is focused on making sustainable changes in the way that clinical trials are created, practiced, and discussed in the communities they are representing. Learn more about ACORI and the Executive Summary here.