Patients from historically medically underserved groups, including patients of color and those who are Spanish-speaking, have less cancer family history information available to them. In addition, existing health records are less comprehensive, according to a study published October 4 in the Journal of the American Medical Association Network Open.
Researchers from Huntsman Cancer Institute at the University of Utah (the U) and Perlmutter Cancer Center at NYU Langone Health sifted through electronic health record information in two major health care systems and broke them into subgroups: race, ethnicity, language preference, and gender. Researchers found disparities in the availability and comprehensiveness of cancer family history information for patients from different groups.
“Algorithms are being used by more health care systems to identify patients for specialty care,” says Kim Kaphingst, ScD, director of Cancer Communication Research at Huntsman Cancer Institute and professor in the Department of Communication at the U. “However, systematic differences in electronic health record data leads to disparities in identifying patients. Providers are also less able to identify patients in need of changing cancer screening schedules based on their family history. Having less family history information in the record can have a trickle-down effect that negatively affects the care patients are receiving.”
This research was funded by the National Cancer Institute through the Inherited Cancer Syndromes Collaborative of the Cancer Moonshot Initiative. Kaphingst is one of the principal investigators of the study, together with Meena Sigireddi, MD, at NYU Langone Health. Questions started to surface when Kaphingst and her fellow researchers noticed they were identifying fewer Spanish-speaking patients than expected.
“Based off what we found, we want to see how we can improve the collection of family history information, especially from Spanish-speaking patients,” Kaphingst says. “What’s the best way to ask questions about cancer in the family? Could we use an online tool on MyChart or have a patient navigator at appointments collecting family history? We want to make sure all patients have access to needed cancer genetic services.”
With misinformation more prevalent than ever, mistrust has become a critical factor in people’s unwillingness to share family medical history adds Kaphingst. But with additional funding from the National Cancer Institute, she and her colleagues are trying to find answers to their questions.
Researchers from the U included Daniel Chavez Yenter, MPH, a predoctoral fellow in the Department of Communication. Guilherme Del Fiol, MD, PhD; Ken Kawamoto, MD, PhD, MHS, FACMI, FAMIA; and Rick Bradshaw, PhD, aided with biomedical informatics. Other members of the team from Huntsman Cancer Institute included Saundra Buys, MD; Wendy Kohlmann, MS, CGC; Joshua Schiffman, MD; and Sarah Colonna, MD.
About Huntsman Cancer Institute at the University of Utah
Huntsman Cancer Institute at the University of Utah is the official cancer center of Utah and the only National Cancer Institute-designated Comprehensive Cancer Center in the Mountain West. The campus includes a state-of-the-art cancer specialty hospital and two buildings dedicated to cancer research. Huntsman Cancer Institute provides patient care, cancer screening, and education at community clinics and affiliate hospitals throughout the Mountain West. It is consistently recognized among the best cancer hospitals in the country by U.S. News and World Report. The region’s first proton therapy center opened in 2021 and a major hospital expansion is underway. Huntsman Cancer Institute is committed to creating a diverse and inclusive environment for staff, students, patients, and communities. Advancing cancer research discoveries and treatments to meet the needs of patients who live far away from a major medical center is a unique focus. More genes for inherited cancers have been discovered at Huntsman Cancer Institute than at any other cancer center, including genes responsible for breast, ovarian, colon, head and neck cancers, and melanoma. Huntsman Cancer Institute was founded by Jon M. and Karen Huntsman.