The following news release was issued by The Fenway Institute.
In a historic move that will advance health for lesbian, gay, bisexual, and transgender (LGBT) people, the U.S. Department of Health and Human Services will require that all Electronic Health Record (EHR) systems certified under the Meaningful Use program have the capacity to collect sexual orientation and gender identity information from patients.
The new rules released October 6 by the Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator of Health Information Technology (ONC) will require EHR systems certified under Stage 3 of Meaningful Use to allow users to record, change, and access structured data on sexual orientation and gender identity. This requirement is part of the 2015 Edition “demographics” certification criterion and adds SO/GI data to the 2015 Edition Base EHR definition, which is a part of the definition of Certified EHR Technology (CEHRT).
The Institute of Medicine and The Joint Commission have each recommended asking questions about sexual orientation and gender identity in clinical settings and including this data in EHR systems. A 2011 report by the Institute of Medicine, “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding,” highlighted routinely collecting data on sexual orientation and gender identity in health care settings as a potent strategy to end LGBT invisibility in health care and eliminate the health disparities experienced by LGBT people.
“At the 2012 Institute of Medicine workshop on this topic I testified to the clinical importance of providers knowing their patients’ sexual orientation and gender identity, including the need to offer transgender individuals appropriate preventive screenings in a sensitive manner,” said Harvey Makadon, M.D., Director of Education and Training at the Fenway Institute and a member of the Institute of Medicine committee that oversaw the 2011 report on LGBT health.
The new rules note: “Where the patient chooses to disclose [SO/GI] information, the inclusion of this information can help those within the patient’s care team to have more information on the patient that can aid in identifying interventions and treatments most helpful to the particular patient. Additionally, sexual orientation and gender identity can be relevant to individual treatment decisions; for example, transgender men who were assigned female at birth should be offered a cervical exam, as appropriate.”
The Fenway Institute, working in collaboration with the Center for American Progress and other organizations, has been a lead advocate for this policy change and contributed to the public discussion around the need to include SO/GI data in the Meaningful Use Stage 3 guidelines.
A 2014 study by The Fenway Institute and the Center for American Progress published in PLOS ONE Journal found that a diverse group of patients understood the importance of asking questions about sexual orientation and gender identity in clinical settings, and that they would be willing to answer questions about sexual orientation and gender identity during the patient registration process. The study also identified a set of four simple questions that can be integrated into existing Electronic Health Records across clinical settings to collect data about patient sexual orientation and gender identity. The new ONC rule adopted the SO/GI question designs outlined in the PLOS One Journal article as well as other recommendations related to replacing outdated and offensive terminology in the code sets for SO/GI data collection.
The Fenway Institute, CAP, the Mayo Clinic, and more than 100 other health care, research, professional, and patient advocacy organizations have submitted several group comments to CMS and ONC encouraging the step of requiring certified EHR systems to have the capacity to collect SO/GI data. In conjunction with the comments filed earlier this year, the Do Ask, Do Tell project team also convened more than 20 experts from around the country, including leaders from the American Medical Association, the National Association of Community Health Centers, Kaiser Permanente, the Veterans Health Administration, GLMA, Partners Healthcare, the Human Rights Campaign, and many other institutions, to identify remaining research gaps and opportunities for advancing the collection of SO/GI data in clinical settings.
This convening identified a number of key steps for making meaningful SO/GI data collection in clinical settings a reality, including training clinical staff in how to collect and use SO/GI data, talking with LGBT community members about the importance of these data and applicable privacy and confidentiality protections, and ensuring that robust nondiscrimination protections are in place throughout the health care system—including the proposed federal regulations implementing Section 1557, the civil rights provision of the Affordable Care Act, which are open for comment until November 9.
For more on this topic, please see:
- Online toolkit for collecting SO/GI data
- “Optimizing Use of Sexual Orientation and Gender Identity Information in the EMR,” an oped by Harvey Makadon, MD in the journal Healthcare Informatics
- “How To Collect the Information We Need From LGBT Patients,” an oped by Sean Cahill, PhD in Huffington Post