Integration of sexual orientation and gender identity data into a comprehensive cancer center tumor registry: challenges and lessons learned.

BACKGROUND

Sexual and gender minorities (SGM) experience health disparities across cancer care continuum. However, inconsistent sexual orientation and gender identity (SOGI) data collection precludes measurement of the burden, and points to intervene. Comprehensive cancer centers (CCC) and their network hospitals are integrating SOGI data collection in their electronic medical records (EMRs), but significant challenges and barriers remain in data completion.

METHODS

We evaluated the completeness of SOGI data in EMRs between 2021 and 2023 for cancer registry patients from 3 of the 54 CCC network hospitals/clinics in western PA used descriptive and bivariate statistics to compare between those with completed data and those that did not.

RESULTS

Results found 12% of patients with completed SOGI data with notable differences by sex-at-birth, urban/rural status, and age. SOGI data completion rates increased each year significantly but overall remained low.

CONCLUSION

Strong leadership, culturally sensitive education of clinical, research staff and patients, routine monitoring of SOGI data, and education of SGM on self-advocacy can address some of these gaps.