Obama Administration Takes Key Step to Expanding Collection of Voluntary Sexual Orientation and Gender Identity Data in Health Care Settings

Our health system’s shift from paper health records to Electronic Health Records (EHRs) offers a historic opportunity to expand the collection of sexual orientation and gender identity (SO/GI) demographic data in health care settings. Such data are essential to improving health care outcomes for lesbian, gay, bisexual, and transgender (LGBT) people, as well as for better understanding and reducing health disparities affecting the LGBT population.

Unfortunately, most EHR systems currently do not have the capacity to record these data, which exacerbates the invisibility of LGBT people in health care settings. To address this issue, in 2014 The Fenway Institute and the Center for American Progress coordinated a letter from 151 LGBT and HIV groups recommending that the Office of the National Coordinator for Health Information Technology (ONC) require EHR systems certified under the Meaningful Use of Electronic Health Records program to have the capacity to collect SO/GI data and requesting that the National Library of Medicine develop new codes to accurately capture SO/GI data electronically.

Today (March 30, 2015) ONC responded in a new proposed rule titled “2015 Edition Health IT Certification Criteria, 2015 Edition Base Electronic Health Record Definition, and ONC Health IT Certification Program Modifications.” This draft rule marks a major step forward in advancing the routine and standardized collection of SO/GI data in clinical settings by proposing to require that all EHR systems certified under Meaningful Use have the capacity to collect SO/GI demographic data. The proposed rule would not require patients to share information about their sexual orientation or gender identity if they don’t want to, and would not require providers to record any SO/GI information for their patients if they don’t yet feel comfortable doing so.

The draft rule poses several questions related to the proposed criterion that certified EHR systems have the capacity to record SO/GI data:

  • Are the proposed standard sexual orientation and gender identity terms (which are based on Systematized Nomenclature of Medicine (SNOMED) codes) appropriate?
  • Should there be standardized SO/GI questions as well as standardized terms?
  • Should certified systems have to include both sexual orientation and gender identity questions?

The Centers for Medicare and Medicaid Services (CMS), which oversees the implementation of the Meaningful Use program, also published a proposed rule today. The CMS proposed rule does not explicitly address SO/GI data, though the implications of this omission are currently unclear.

The inclusion of SO/GI in the ONC rule is a critical indicator of commitment among our nation’s federal health leadership to helping reduce LGBT health disparities by facilitating and expanding the collection of SO/GI data in health care settings. Such data collection is consistent with recommendations made by the Institute of Medicine and Healthy People 2020, as well as with the Obama Administration’s ongoing commitment to addressing barriers to equality for LGBT people.

To ensure that these rules—and the Meaningful Use program as a whole—fully address LGBT health issues, The Fenway Institute and the Center for American Progress will be submitting public comments on both of these proposed rules by May 29, 2015. We encourage sign-ons from a wide range of health professional, LGBT, and HIV organizations. If you are interested in reviewing our public comments and signing on in support, please email us at DoAskDoTell@FenwayHealth.org. (Please put “SOGI in EHRs” in your email subject line.) Also feel free to reach out to us if you want to discuss these issues and better understand them. We will soon be publishing a website dedicated to helping providers and other health system stakeholders implement appropriate SO/GI data collection in clinical settings—please check back at www.fenwayhealth.org for future details.

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