Sexual Orientation and Gender Identity Data Collection in Clinical Settings and in Electronic Health Records: A Key to Ending LGBT Health Disparities

LGBT Health. 2014 Mar;1(1):34-41. doi: 10.1089/lgbt.2013.0001. Epub 2013 Aug 2.


The Institute of Medicine's (IOM's) 2011 report on the health of LGBT people pointed out that there are limited health data on these populations and that we need more research. It also described what we do know about LGBT health disparities, including lower rates of cervical cancer screening among lesbians, and mental health issues related to minority stress. Patient disclosure of LGBT identity enables provider-patient conversations about risk factors and can help us reduce and better understand disparities. It is essential to the success of Healthy People 2020's goal of eliminating LGBT health disparities. This is why the IOM's report recommended data collection in clinical settings and on electronic health records (EHRs). The Center for Medicare and Medicaid Services and the Office of the National Coordinator of Health Information Technology rejected including sexual orientation and gender identity (SOGI) questions in meaningful use guidelines for EHRs in 2012 but are considering this issue again in 2013. There is overwhelming community support for the routine collection of SOGI data in clinical settings, as evidenced by comments jointly submitted by 145 leading LGBT and HIV/AIDS organizations in January 2013. Gathering SOGI data in EHRs is supported by the 2011 IOM's report on LGBT health, Healthy People 2020, the Affordable Care Act, and the Joint Commission. Data collection has long been central to the quality assurance process. Preventive health care from providers knowledgeable of their patients' SOGI can lead to improved access, quality of care, and outcomes. Medical and nursing schools should expand their attention to LGBT health issues so that all clinicians can appropriately care for LGBT patients.

Keywords: clinical settings; data collection; disparities; electronic health record; meaningful use.