THE BLOG

End LGBT Invisibility in Health Care Now! Do Ask, Do Tell

02/25/2013 03:32 pm ET | Updated Feb 02, 2016

Lesbians are less likely than heterosexual women to have health insurance or get preventive health care such as mammograms, and they may be at greater risk for breast cancer and ovarian cancer. Some studies indicate higher prevalence of these cancers among lesbians, yet we don't know for sure, because we don't gather enough data systematically. What we do know is that while lesbians are as likely as straight women to get cervical cancer, they are up to 10 times less likely to be screened for it.

Until very recently, lesbian, gay, bisexual and transgender (LGBT) people have been invisible in health care. Most providers do not ask about sexual orientation or gender identity, nor are they trained in the unique health care needs of LGBT people or the health disparities they experience. Many LGBT patients are not "out" to their providers; as a result, they are not screened for issues that may disproportionately affect LGBT people. Moreover, sexual orientation isn't just about identity. For example, a recent study found that nearly 10 percent of men who identified as straight had had sex with another man in the past year -- and these men were less likely to use condoms than men who identified as gay. This underscores the need to ask questions about sexual behavior as well as sexual identity.

Thankfully, the Obama administration has taken significant steps to end LGBT invisibility in health care. Healthy People 2020, the federal government's blueprint for improving our nation's health over the next decade, includes a groundbreaking call to action to eliminate LGBT health disparities. The Institute of Medicine published its first-ever report on LGBT health in 2011. The National Health Interview Survey has added a question regarding sexual orientation. And last fall, the Institute of Medicine held a practice-oriented workshop on gathering data on sexual orientation and gender identity in electronic health records.

Asking about sexual orientation and gender identity in clinical settings is a critical step that will enhance our knowledge of LGBT population health and improve patient-provider interactions. There are important health reasons to ask about sexual orientation and gender identity. For example, providers who know that a patient is a sexually active gay man can warn him about a recent syphilis outbreak and test him for sexually transmitted infections more common among gay men. Doctors who know that a woman is a lesbian can screen her for obesity and cardiovascular disease, conditions more prevalent among lesbians. Providers who don't know that a female patient is transgender may not know to test her for prostate cancer.

Currently the Office of the National Coordinator for Health Information Technology (ONCHIT) is considering whether to include sexual orientation and gender identity in the Stage 3 "meaningful use" guidelines as a core demographic objective. The Fenway Institute, the Center for American Progress and the Center of Excellence for Transgender Health strongly support such inclusion, as do over 140 other LGBT, HIV and other health advocacy organizations that joined our community comment to ONCHIT last month. As noted at a recent ONCHIT Policy Committee meeting, public comment submitted on this issue was "overwhelmingly supportive" of asking these questions.

Some say that requiring providers or clinic staff to gather these data would be burdensome. In our view, LGBT health disparities are even more troublesome. Gathering LGBT data will improve providers' knowledge of their patients' experiences, needs and concerns, leading to better quality of care and health outcomes. Importantly, the Affordable Care Act and other federal regulations establish standards for the privacy and confidentiality of data included in electronic health records.

Some have noted that providers and health clinic staff will have to be trained in how to gather these data in culturally competent ways, and that LGBT community members will need to understand why these questions are being asked. We agree. However, in our view, these are not insurmountable obstacles or reasons not to include LGBT data in medical records. Instead, they identify critical implementation priorities and provide guidance for concrete future steps in establishing LGBT data collection standards, developing appropriate training for providers, engaging with LGBT community members to understand and address their concerns, and working with policy makers on electronic record systems that actively support and serve the well-being of LGBT patients.

Our federal government is considering right now whether to agree that gathering data on sexual orientation and gender identity in clinical settings is a critical component of understanding and addressing LGBT health disparities. If we miss this opportunity to start systematically gathering such data, the opportunity may not come along again for decades. If we want to better understand LGBT health disparities and reduce them, we must know who LGBT patients are and how to best meet their health needs. Let's end the invisibility of LGBT people in the health system now.

Sean Cahill, Ph.D., and Harvey Makadon, M.D., are with The Fenway Institute at Fenway Health; Dr. Makadon also teaches at Harvard Medical School. Kellan Baker, M.P.H., M.A., is with the Center for American Progress. Joanne Keatley, M.S.W., is with the Center of Excellence for Transgender Health.