If all goes according to plan, come July 1, LGBTQ health care advocates will be getting a long-sought change. The federal agency that oversees health information technology will mandate that all health information systems it certifies add sexual orientation and gender identity to their core questions. Those are the digital systems, made by various companies and often called electronic medical records (EMRs), where your health care provider inputs your name, date of birth, meds you’re taking, allergies, language spoken, and other key data.
Such data is not only relied on by everyone at a given health center but is also often shared with pharmacies, insurers, and health specialists to create a more seamless health care experience.
The change is a long time coming, according to Kellan Baker, Ph.D., M.P.H., a researcher at Johns Hopkins Bloomberg School of Public Health focusing on LGBTQ health care, who is among those who’ve worked on the issue for nearly a decade.
“Sexual orientation and gender identity [often called SOGI] influence people’s health in very real ways, from sexual health to helping a provider understand who a patient’s support network is,” says Baker, who is transgender. When SOGI is clearly marked in a patient’s digital records, “it helps the provider know who’s coming in. And it’s also good for tracking quality measures,” such as whether a certain center is meeting the needs of a subgroup as well as it is the needs of its overall population.
Such data, he says, can also be anonymously collated among several health centers in a locality, region, or state to answer key health questions about a certain group, such as whether they are being adequately screened for certain cancers or other conditions.
“It’s a really critical step forward for the visibility of LGBTQ people in health care settings,” says Baker, “which will make it possible to make sure that everyone gets the care they need—and to be greeted and served [by providers] in the ways we need.” That, he says, includes cutting down on the chances of trans people being misgendered or facing other microaggressions by health workers. “It’s intended to remove some of that burden of saying, ‘This is who I am, and this is what I need’ over and over again.”
An expert committee has recommended to the Office of the National Coordinator (ONC) for Health Information Technology that it approve these changes come July, says Mark Savage, J.D., director of digital health policy at University of California San Francisco, who sits on that committee. The changes would mean that SOGI would have to be included among core questions on information systems certified by ONC, which is almost all of them. It would not yet mean that providers had to ask the SOGI questions. In that regard, says Savage, “the work needs to keep moving forward. Maybe in a year, we’ll start seeing” that requirement.
“This change is so important because so many [LGBTQ] people across the country have not been receiving the care they deserve,” says Savage. “Adding SOGI to health records makes that possible.” The data can indicate “whether you should be having a particular kind of procedure,” such as—for transgender men—the fact that they need to be screened for cervical cancer.
Baker and Savage acknowledge that most LGBTQ folks will understand why providers are asking about their sexual orientation and gender identity. But for those who bristle, feeling that such questions are intrusive, providers require training to acclimate them. Savage says they will need language like, “We need this to provide the best care we can tailored to your particular desire and interests.” Patients should also be able to opt out of answering, he says.
According to Sean Cahill, Ph.D., director of health policy research at Boston’s LGBTQ-focused Fenway Institute, research published in 2014 conducted by the Institute and the Center for American Progress found that even older, rural, red-state, and heterosexual/cisgender people understood the importance of such questions to be asked. For years, says Cahill, the Institute has conducted trainings about the questions in which they are phrased as: 1. “Do you think of yourself as A) straight/heterosexual; B) Lesbian, gay, or homosexual; C) additional categories such as queer or pansexual; D) A blank space for one’s own reply” and (for the second question) “A) What is your current gender identity? And B) What sex were you assigned at birth?”
“It’s good news,” says Cahill of the impending addition of the questions on certified systems. “Just how widespread the collection and use of this data is in health care is going to be very important.”
According to Baker, efforts to get SOGI included started at least as far back as 2014, with a project out of Boston’s longtime LGBTQ-serving Fenway Health center called Do Ask, Do Tell. And it exists alongside efforts to get other health info added to the core questions, such as whether someone has a disability that may not be visible.