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Should Sexual Orientation Be Included In EHRs?

Proponents say it could close gaps in LGBT healthcare, but it raises the question of how much data is too much.
9 Mobile EHRs Compete For Doctors' Attention
9 Mobile EHRs Compete For Doctors' Attention
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When it comes to collecting patient information, more is better. Meaningful Use requirements have pushed for more with the mandatory incorporation of certain demographic data into electronic health records.

But where is the line drawn? An August article published in LGBT Health calls for the expansion of EHR data collection to include sexual orientation and gender identity (SOGI). "Given the outward invisibility of LGBT people and their history of invisibility in the healthcare system, it is critical for clinicians to address and screen for health conditions disproportionately affecting LGBT people and have frank discussions with patients about sexual identity and behavior and gender identity," the article states.

Authors Sean Cahill and Harvey Makadon argue care disparities could be reduced if SOGI data were available to physicians. For example, lesbians and bisexual women experience cervical cancer at the same rate as heterosexual women but are much less likely to get routine Pap tests to screen for cervical cancer.

"We know that simple reminders applied to specific populations once they are identified -- such as text messages encouraging patients to come in for a cervical cancer screening/Pap test -- can make a critical difference in the quality of care provided," the article says.

[ How do you choose the best electronic health record system? Read EHR Roulette: Gambling On Medicine's Future. ]

In 2012, the Center for Medicare and Medicaid Services and the Office of the National Coordinator (ONC) considered including SOGI data collection in the Stage 2 Meaningful Use guidelines for EHR, but ultimately decided not to include it because of the unclear definition of SOGI, questions about where to store the data within the EHR, and whether it was necessary to collect at all.

Under the current MU guidelines, hospitals are required to collect data on a patient's preferred language, sex, language, race, ethnicity and smoking status. SOGI data is slightly more controversial.

"We are much more conditioned currently to respond to religious questions than we are to sexual orientation questions," said Pat Wise, VP for healthcare information systems at Healthcare Information and Management Systems Society (HIMSS), an influential research non-profit. "Obviously those kinds of social and cultural environments can change and are changing. But the question isn't on equal footing with most U.S. citizens."

If the ONC decides to include SOGI data in its EHR requirements, privacy and security within the EHR will be paramount, Wise said, because breaches of data could open doors to violations of confidentiality and discrimination.

Role-based access to SOGI data within the EHR could prevent discrimination by providing the information to caregivers on a need-to-know basis. Certain EHR data needs to be known at all points of care for obvious reasons; for example, name and date of birth are standard ways to identify patients. But more sensitive information, such as SOGI data or HIV status, should be accessed by physicians only. Even at the physician level, Wise said access to SOGI data isn't always necessary.

"If I'm in the ER getting stitches, my sexual orientation isn't relevant for that circumstance," Wise said. "But that information is very relevant for OB/GYN preventative care. It depends on the role in which you're engaging the patient."

The appropriate collection of SOGI data is just as important as the data itself. Some argue there is a lack of a standard of measurement for SOGI data because of the complicated nature of defining sexuality and gender. Proper training of health professionals in LGBT cultural competence to appropriately collect the data could help standardize data collection.

The American Psychological Association, the Center for American Progress and 142 other community-based organizations submitted a community public comment to the ONC calling for the inclusion of SOGI in Meaningful Use guidelines when inclusion of the data was under consideration.

"All information can be used in a negative direction," Wise said. "Sexual orientation is not relevant for a huge number of people providing care, but under certain circumstances it's important for providers to know."