Push for LGBT data collection in Stage 3

Argue that sexual orientation, gender identity data critical to close health gaps
By Erin McCann
12:00 AM

More than 50 patient and consumer organizations are urging the federal government to address population health disparities by ensuring that sexual orientation and gender identity data collection are a focal point of Stage 3 meaningful use.
The Consumer Partnership for eHealth submitted an action plan to the Health IT Policy Committee late August on how to effectively reduce health disparities after conducting a year-long review on the topic.
"We have the chance to leverage Stage 3 of the Meaningful Use Program to make significant progress in addressing disparities, said Debra L. Ness, president of the National Partnership for Women & Families - the group spearheading the CPeH coalition - in a press statement.
The action plan comes on the heels of a recent report published by the LGBT health research group Fenway Institute, which concluded that including sexual orientation and gender identity in clinical health records is critical to ending LGBT health disparities.
"Unless you know about their sexual orientation or gender identity, you really don't know that there are unique health issues that those people may be experiencing," said Harvey Makadon, MD, director of the national LGBT health Education Center and co-author of the paper, in an interview with Healthcare IT News.
The most obvious example, Makadon said, is HIV/AIDS. "People often make assumptions about people and don't ask certain questions, so that if someone doesn't fit their view of who may be a gay man, for example, they may not ask them issues related to sexual risk," he explained.
Or the transgender man who had breast reduction surgery but still needs to have mammograms.
This isn't good for population health management; it's not good for patient-doctor relationships, and it's not financially beneficial, added Makadon.
A recent report by the Joint Center for Political and Economic Studies projected that overall health disparities and premature death cost the U.S. $1.24 trillion from 2003 to 2006.
"Apart from disparities, I think it's also important in terms of taking good care of people," said Makadon, who explained that the healthcare industry frequently examines health trends across different populations, comparing people based on race and ethnicity. "But you can't say anything about for example the rate of pap smears among lesbians," or the rate of HIV testing among gay men unless you really have accurate data.
Much to the chagrin of many industry groups, Centers for Medicare & Medicaid Services didn't include sexual orientation and gender identity data collection requirements for Stage 2 meaningful use after some groups argued that these questions to patients could be deemed offensive, while others questioned the clinical significance of such data.
Ultimately, CMS concluded: "Considering the lack of consensus for the definition of the concept of gender identity and/or sexual orientation as well as for a standard measure of the concept and where it would be most appropriate to store the data within the EHR, we will await further development of a consensus for the goal and standard of measurement for gender identity and/or sexual orientation."
"There's been pushback on many aspects of meaningful use, so they're reluctant to put on too many requirements," Makadon says. He hopes Stage 3 will be different but acknowledges, "it's a process."
Right now, "We don't really have any numbers," he said, and that will continue to negatively affect patient care.
Makadon, who's gay, said back when he first shared his sexual orientation with his physician, the doctor never spoke about it again, which led to Makadon never going back to that doctor. This kind of thing leads to people having negative experiences with the healthcare system, he said.
"You want your doctor to know you as a person," said Makadon. "You can't know someone as a person if you can't know things about them that are incredibly critical to how they define themselves."
"Part of this is putting something in an electronic health record," added Makadon, but the other part is educating and training health professionals to ask the right questions and provide the proper care to all populations.
Managing Editor Mike Miliard contributed to this story.