Welcome to the final installment of Meaningful Use March Madness, a series of blog posts refuting frequently-heard arguments about the criteria proposed for the Electronic Health Record “Meaningful Use” Incentive Program.
Background: ONC released a Request for Comment (RFC) in December outlining its current thinking for Stage 3 of Meaningful Use. One recommendation includes requiring that certified EHRs have the functionality to collect sexual orientation and gender identity (SO/GI) data.
The Claim: The collection of SO/GI information has little or no clinical relevance, makes both providers and patients uncomfortable, and is not yet sufficiently standardized.
The Reality: Lesbian, gay, bisexual, and transgender (LGBT) populations experience significant health disparities; Meaningful Use offers an unprecedented opportunity to better understand and begin to address these disparities by making sure EHR systems are able to collect vital SO/GI data.
“LGBT Americans have experienced — and continue to experience — health disparities.” That’s what HHS Secretary Sebelius said on Monday in her statement on LGBT Health Awareness Week. Surprised? In fact, LGBT people are more likely than the general population to live in poverty, to be uninsured, and to face barriers to quality health care such as refusals of care, substandard care, and exclusion from health education and outreach efforts. As a result, the LGBT population experiences significant disparities in health indicators such as smoking, obesity, experiences of abuse and violence, mental and behavioral health concerns, and HIV infection.
So how do we address these inequities? Well, the venerable Institute of Medicine (IOM) has said we must begin by understanding the problem and targeting appropriate remedies, and that starts with collecting basic data in clinical settings about sexual orientation and gender identity.
Arguments have been made that the collection of SO/GI information has little to no clinical relevance. We disagree. We can’t possibly expect to provide safe, effective, high-quality care without basic clinical and demographic information.
For example, if a doctor isn’t aware that a patient who presents as male is in fact a transgender man, the provider won’t know to screen the patient for cervical or ovarian cancer. Similarly, if a provider only asks about the husbands or boyfriends of their female patients, a woman’s experience of domestic violence at the hands of her female partner might go undetected. And we are all familiar with the ongoing tragedy of HIV, an epidemic that still disproportionately affects gay and bisexual men and transgender women. Without discussing sexual orientation and gender identity, providers cannot know which HIV prevention materials or services are most relevant for their patients.
Some say the standards for SO/GI data don’t exist. But it doesn’t mean they can’t. We’ve standardized data on quick timelines before, and the rampant health disparities experienced by LGBT individuals make a compelling case for speeding up the work already underway.
We have work to do — no doubt. In addition to creating the standards, we must also develop data collection methods that don’t alarm patients or providers. We had the same experience when it came to collecting race and ethnicity data years ago, but rather than avoiding data collection altogether, we built toolkits to help the job get done and get done right. A recent IOM workshop showcased the great work already done by organizations like Fenway Health to determine the most appropriate and patient-friendly way to ask for and document SO/GI information.
The bottom line is that SO/GI data collection is one of the best tools in our arsenal to identify and reduce LGBT health disparities. These data provide insights into central aspects of LGBT people’s lives that profoundly affect their health, such as how they form and support families, the mental health consequences of discrimination, and the effects of major public health concerns such as smoking and obesity.
The good news is that the Health IT Policy Committee proposed it for Stage 3 of Meaningful Use, which would make EHRs have the basic functionality to capture standardized SO/GI data. While work remains to figure out how to best support providers and patients in the collection of SO/GI data, we have to at least be sure that, as part of Stage 3, EHRs have the capability to collect and store this information so it can be used to improve clinical care.
As we move beyond LGBT Health Awareness Week, we must keep in mind that patient- and family-centered care begins with viewing the “patient” as a person — including his or her sexual orientation and gender identity. It’s high time we put an end to all health disparities; we cannot waste an opportunity to enhance health equity through something as basic as creating the capacity for data collection.
 Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities; Board on the Health of Select Populations; Institute of Medicine, The Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) People: Building a Foundation for Better Understanding, Washington, DC: National Academies Press, 2011.
 Center for American Progress (CAP) comments on Stage 3 MU RFC.