Researchers at Huntsman Cancer Institute (HCI) at the University of Utah have won a five-year, more-than-$5 million grant through the NIH’s National Cancer Institute’s (NCI) Cancer Moonshot initiative to fund a study on genetic counseling, genetic communication, and genetic services to patients.
The researchers plan to assess strategies for identifying patients seeing primary care physicians who may benefit from genetic counseling. A key goal of the study, according to HCI, is finding the best way to reach people from minority racial and ethnic groups and those living in rural areas, for whom access to genetic services has been shown to be a barrier.
Investigators plan to test an electronic health record (EHR)-based method designed to automatically identify patients who may benefit from genetic counseling and testing to determine their cancer risks. The study will span 48 primary care clinics in two health care systems, and compare two models of delivering genetic services to 1,900 primary care patients using a randomized trial design.
The trial is intended to determine if the two methods being modeled for reaching patients in need of genetic counseling are equivalent. One model will identify patients meeting selected criteria through the HER, with patients being notified that they are eligible for an appointment with a genetic counselor. The other model will place educational resources on genetic counseling in the patient portal, enabling patients to learn about, then opt to proceed with, genetic testing on their own.
“What we are doing is using the information that’s already in the EHR to identify people who have not had cancer but who might have familial risk, particularly for breast and colorectal cancer,” said Kimberly Kaphingst, ScD, an HCI cancer researcher and professor of communication at the university.
Dr. Kaphingst is one of two leaders of the study. The other is Saundra Buys, M.D., medical director of HCI's High Risk Breast Cancer Clinic and a professor in the department of medicine at the university.
Drs. Kaphingst and Buys are leading a research team of more than 20 scientists that is partnering on the study with researchers from New York University (NYU). The partnership will result in participants that come from either of two distinct regions—enabling the researchers to compare the regions’ differences between rural and urban populations, and in mix of race and ethnicity. HCI says its EHR system is compatible with NYU’s.
“This project will provide a pathway for patients who are interested in learning more about the genetic factors that may affect their cancer risk and to access that information with the support of genetic counselors and physicians in their health care system,”
The clinical study builds on a $3.8 million NCI grant awarded last year to HCI, the university, and Intermountain Healthcare to develop informatics technologies for cancer research and management. Principal investigators for the grant are Kensaku Kawamoto, MD, PhD, MHS, and Guilherme Del Fiol, MD, PhD, both of the university’s Department of Biomedical Informatics.