Patient perspectives on safety and privacy in sexual orientation and gender identity data collection.

Abstract

Background: There is insufficient epidemiologic data to serve sexual and gender minority communities. However, disclosing sexual orientation and gender identity in health care presents risks to patients.

Methods: We collected surveys from 174 cancer hospital patients to understand their perspectives on safety associated with sexual orientation and gender identity data collection.

Results: Overall, 18.4% of participants identified as sexual or gender minorities. Sexual and gender minority participants were more likely to report experiencing unequal treatment in health care than participants who did not identify as a sexual or gender minority. Most patients felt safe or comfortable answering sexual orientation and gender identity questions and having health-care professionals within their health system view their data. Fewer wanted data available to front-desk staff or shared to other health systems. Few thought sexual orientation and gender identity was important to health care. Most believed their data would be kept safe and private; patient concerns included stigma, privacy, and data vulnerability.

Conclusions: Better policy protections and data segmentation are needed to achieve patient safety and health-care quality related to sexual orientation and gender identity data collection.