Electronic health records contain dispersed risk factor information that could be used to prevent breast and ovarian cancer

Abstract

Objective: The genetic testing for hereditary breast cancer that is most helpful in high-risk women is underused. Our objective was to quantify the risk factors for heritable breast and ovarian cancer contained in the electronic health record (EHR), to determine how many women meet national guidelines for referral to a cancer genetics professional but have no record of a referral.

Methods and materials: We reviewed EHR records of a random sample of women to determine the presence and location of risk-factor information meeting National Comprehensive Cancer Network (NCCN) guidelines for a further genetic risk evaluation for breast and/or ovarian cancer, and determine whether the women were referred for such an evaluation.

Results: A thorough review of the EHR records of 299 women revealed that 24 (8%) met the NCCN criteria for referral for a further genetic risk evaluation; of these, 12 (50%) had no referral to a medical genetics clinic.

Conclusions: Half of the women whose EHR records contain risk-factor information meeting the criteria for further genetic risk evaluation for heritable forms of breast and ovarian cancer were not referred.

Keywords: electronic health records; genetics; oncology.

Figure 1.

Examples of EHR documents (deidentified) containing risk-factor information listed in NCCN Guidelines Version 3.2019. (A) EHR note that includes both family history of breast cancer and Ashkenazi Jewish heritage in narrative text. (B) Outside EHR dermatology note that includes information on family history of breast and uterine cancer (arrow). (C) Scanned outside imaging requisition that includes family history of cancer (arrow). EHR: electronic health record.

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Figure 2.

Location of risk-factor information within UW Medicine and outside EHR. Each row represents a patient whose record contained information meeting the NCCN 3.2019 criteria for referral to a cancer genetics professional but who had no record of a referral. The black circles indicate the source contained information meeting the NCCN 3.2019 criteria for referral. The gray circles indicate risk-factor information not meeting the NCCN criteria, such as a family history of cancer without a mention of age. EHR: electronic health record; FH: Family history; NCCN: National Comprehensive Cancer Network; UW: University of Washington.