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. 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."
Kim Kaphingst, ScD, Director of Cancer Communication Research, Huntsman Cancer Institute and Professor, Department of Communication, University of Utah
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.
Chavez-Yenter, D., et al. (2022) Association of Disparities in Family History and Family Cancer History in the Electronic Health Record With Sex, Race, Hispanic or Latino Ethnicity, and Language Preference in 2 Large US Health Care Systems. JAMA Network Open. doi.org/10.1001/jamanetworkopen.2022.34574.