Maryland To Collect LGBT Data As Part Of Health Reform

What do LGBT people experience when they’re trying to access health insurance or health care? Does it matter? If so, how do we collect information about these experiences?

LGBT data do matter, because the future of health care is built on data. Data create our understandings of how healthy Americans are. They are the points on the map showing us where health gaps exist between different population groups, such as the health disparities affecting LGBT Americans. And they are the building blocks that create the foundation for effective efforts to close these gaps and achieve better health for all.

Maryland is one of the states leading the way in advancing LGBT data collection efforts. The Maryland Health Care Commission, which protects the interests of consumers in Maryland’s health system, is driving an effort to incorporate LGBT consumer input into quality of care and consumer satisfaction evaluations by adding questions about sexual orientation, gender identity, and relationship status (including options for identifying a same-sex partner or spouse) to its evaluation of the state’s patient-centered medical home program.

Maryland’s patient-centered medical home program is a groundbreaking statewide effort to coordinate better care for predominantly lower-income, high-need individuals while lowering costs. Evaluating the experiences of LGBT people in this program — which requires high patient trust in providers and good patient-provider interactions — is an ideal opportunity for the state to develop the tools it needs to extend LGBT-inclusive data collection efforts into other areas of its health system.


One such area will be the state’s oversight of health plans sold through its health insurance exchange. The exchanges, which are new state-based marketplaces where individuals and small businesses will be able to shop for affordable health insurance starting in 2014, have the potential to be new sources of vital data on the health needs and experiences of people across the country.

As CAP explains in a new FAQ on collecting sexual orientation and gender identity data, the exchanges offer a key opportunity to collect information that will help LGBT people benefit from health reform.

In particular, the exchanges must have the capacity to connect a diverse applicant population with appropriate health insurance coverage. To assess how effectively exchange outreach and enrollment programs are connecting with underserved groups of people seeking coverage, exchanges should collect voluntary information from enrollees on a range of demographic factors associated with health disparities, including race, ethnicity, sexual orientation, gender identity, and primary language.

Exchanges must also certify participating insurance plans and oversee their activities. To monitor how well participating plans are serving different groups of consumers, exchanges should require plans to have the capacity to collect and report the same range of demographic information. To ensure this information is not misused, federal regulations governing the exchanges in every state already prohibit discrimination on any of these bases by exchange employees, contractors, and qualified health plans.

Collecting better and more comprehensive data is a fundamental component of effective health reform. Any efforts to ensure that all Americans have access to insurance and the care they need must include LGBT Americans — and the first step in crafting these initiatives is collecting LGBT data.