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8/22/2013
01:47 PM
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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.

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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."

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David F. Carr
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David F. Carr,
User Rank: Author
8/23/2013 | 1:31:44 PM
re: Should Sexual Orientation Be Included In EHRs?
Based on the headline, I thought the article would say the data was being included and the LGBT community was complaining about the potential for discrimination. Definitely cuts both ways.
Alex Kane Rudansky
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Alex Kane Rudansky,
User Rank: Author
8/23/2013 | 3:05:20 PM
re: Should Sexual Orientation Be Included In EHRs?
The LGBT community has been a proponent of including the data, both to close certain identified gaps in LGBT healthcare and also to collect more data on LGBT health in general. There isn't a lot out there, statistically speaking, on LGBT health.
David F. Carr
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David F. Carr,
User Rank: Author
8/23/2013 | 3:11:16 PM
re: Should Sexual Orientation Be Included In EHRs?
I can imagine a whole other debate over which labels to use - a whole taxonomy of orientations
Alex Kane Rudansky
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Alex Kane Rudansky,
User Rank: Author
8/23/2013 | 3:14:21 PM
re: Should Sexual Orientation Be Included In EHRs?
There's that too, which the ONC says is why they decided not to include it in the current MU requirements. There is the issue of how to define and standardize the orientations and identities. Proponents say there is existing nomenclature, but it's always murky when it comes to SOGI, because of the large spectrum out there.
ChrisMurphy
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ChrisMurphy,
User Rank: Author
8/23/2013 | 4:48:20 PM
re: Should Sexual Orientation Be Included In EHRs?
The "what data to collect" debate will go well beyond this. If the reason for collecting LGBT data is that we know some conditions disproportionately affect the community, it wouldn't take long to find other correltations. Should income be on the EHR?
jaysimmons
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jaysimmons,
User Rank: Apprentice
8/26/2013 | 6:33:32 PM
re: Should Sexual Orientation Be Included In EHRs?
I tend to agree that if we start opening doors as to what information is required, then we may never stop, and patient privacy would become an even bigger concern than it is right now. I do however think that more information is better, especially in certain circumstances like the cervical cancer screening reminders above, its just a matter of being able to collect the information for me and not a matter of being forced to collect that information.

Jay Simmons
Information Week Contributor
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