Sexual Orientation and Gender Identity Data Collection Update: U.S. Government Takes Steps to Promote Sexual Orientation and Gender Identity Data Collection Through Meaningful Use Guidelines

LGBT Health. 2014 Sep;1(3):157-60. doi: 10.1089/lgbt.2014.0033. Epub 2014 Jul 2.


Collecting data on sexual orientation and gender identity (SO/GI) in healthcare settings and in electronic health records (EHRs) is essential to understanding, addressing, and reducing LGBT health disparities. The federal government took two key steps in early 2014 in support of asking SO/GI questions in clinical settings as part of the meaningful use of EHRs. First, the Office of the National Coordinator for Health Information Technology issued proposed 2015 Edition Certified EHR Technology (CEHRT) Criteria, which suggest Systematized Nomenclature of Medicine (SNOMED) code sets for SO/GI data collection in 2017. To facilitate the effective and accurate collection of SO/GI data, 153 LGBT and HIV groups recommended that the national coordinator request that the National Library of Medicine develop new codes to reflect SO/GI data. Second, the Health Information Technology Policy Committee submitted recommendations to the national coordinator, including the recommendation that "CEHRT [certified EHR technology] provides the functionality to capture … sexual orientation, gender identity." If the national coordinator accepts this recommendation, it will be put up for public comment in fall 2014 along with other Stage 3 proposed rules. Also, the 2017 Edition CEHRT Notice of Proposed Rule Making Criteria will be up for comment in fall 2014. Final Stage 3 Meaningful Use Guidelines will be published in summer 2015, and other key steps will take place into 2017. A critical parallel step is the training of clinical staff on LGBT health disparities and how to use SO/GI data and manage them in ways that meet the clinical needs of LGBT patients and protect confidentiality and privacy. We must also educate LGBT community members about why offering this information is important for their health and how collecting SO/GI data in EHRs is an important step to understanding LGBT health, reducing disparities, and improving outcomes.

Keywords: data collection; electronic health records; gender identity; health disparities; health information technology; meaningful use; sexual orientation.