June 28, 2024

Wyden and Merkley Support HHS Proposal to Make Data Collection on Sexual Orientation and Gender Identity More Inclusive in Electronic Health Records

Washington, D.C. — U.S. Senators Ron Wyden, D-Ore., and Jeff Merkley, D-Ore., today highlighted their support for a Department of Health and Human Services (HHS) proposal to update national standards in electronic health record systems to include preferred names and pronouns, and to record a patient’s sex parameter for clinical use in medical records to ensure accurate treatment – which are essential to allowing providers to give LGBTQ+ patients more accurate and personalized medical care. 

Wyden and Merkley also asked HHS to make additional changes to better address health disparities faced by LGBTQ+ individuals, including adding new data about LGBTQ+ Indigenous patients, and ensuring health care providers and staff are culturally competent and transparent about how sensitive patient data will be used and protected.

“Electronic health record systems that only offer ‘male’ or ‘female’ options for recording the sex of a patient and that do not provide a place to enter preferred names and pronouns may result in a patient's medical records misgendering them and failing to accurately represent their identity and medical history. This devalues the patient and can lead to a health care provider diagnosing or treating a patient without relevant information. This oversight may result in inadvertent discrimination that compromises a patient’s trust in the health care system, puts their health at risk, and diminishes efforts to promote inclusive and equitable health care access for all people, regardless of their gender identity,” Wyden and Merkley wrote in their letter to the HHS Office of the National Coordinator for Health Information Technology (ONC).

The full text of the letter is here.