Systematic differences in the electronic health record can negatively affect patient care

Patients from historically underserved groups, including patients of color and Hispanics, have less information about their family history of cancer. Also, according to a study published on October 4, existing health records are less comprehensive Journal of the American Medical Association Online.

Researchers at the University of Utah’s Huntsman Cancer Institute and the Perlmutter Cancer Center at New Langone Health analyzed electronic health records from two major health care systems and divided them into subgroups by race, ethnicity, language preference, and gender. Researchers have found differences in the availability and generality of cancer family history information for patients from different groups.

Algorithms are being used by more healthcare systems to identify patients for specialized care. However, systematic differences in electronic health record data lead to differences in patient identification. Providers cannot identify patients who need to change cancer screening programs based on their family history. Having less family history information in the record can have the insidious effect of negatively impacting the care patients receive.

Kim Kaffingst, 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’s Cancer Moonshot Initiative Collaboration on Inherited Cancer Syndromes. Kafingst is one of the study’s principal investigators, along with Mina Sighiredi, MD, of New Langone Health. Questions began to emerge when Kafingst and her colleagues realized that researchers were identifying fewer Spanish-speaking patients than expected.

“Based on what we’ve found, we want to see how we can improve family history information, especially from Spanish-speaking patients,” says Kafingst. “What’s the best way to ask questions about cancer in the family? Can we use an online tool on MyChart or have a patient navigator at appointments that collects family history? We want to make sure all patients have access to important cancer genetics services.”

With misinformation more prevalent than ever, mistrust has become a key factor in people’s reluctance to share family medical history, added Caffingston. But with additional funding from the National Cancer Institute, she and her colleagues are trying to find answers to their questions.