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

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.

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

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.

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.