How to Collect the Information We Need From LGBT Patients

The maxim that you cannot manage what you cannot measure has become a cliché. But when it comes to managing―and ending―the disparities in health experienced by lesbian, gay, bisexual and transgender (LGBT) people, the need for standardized collection of data is critical.

In a 2011 report, the Institute of Medicine notes that the routine collection of data on sexual orientation and gender identity in health care settings―and including this data in Electronic Health Records―would be a potent tool in eliminating the health disparities experienced by LGBT people. There has been little movement on this three-year-old recommendation, which is echoed by the Joint Commission (an independent nonprofit that provides accreditation to health care facilities), because there has been no consensus on how, exactly, to collect this data.

Until now.

A study published this month in PLOS ONE Journal evaluated a set of standardized questions about sexual orientation and gender identity and showed that a diverse group of patients are willing to answer questions about sexual orientation and gender identity in clinical settings, and that they understood the importance of answering these questions during the patient registration process.

The survey was implemented at four health care centers: Fenway Health, in Boston, MA; Beaufort Jasper Hampton Comprehensive Health Services in rural South Carolina; Chase Brexton Health Center in Baltimore and Columbia, Maryland; and Howard Brown Health Center in Chicago, IL. More than half of the respondents were heterosexual and the pool of respondents were racially diverse with 44 percent reporting that they were White; 41 percent Black; and eight percent Hispanic.

They were asked whether they thought of themselves as "lesbian, gay or homosexual"; "straight or heterosexual"; "bisexual"; "something else, please describe; or "don't know." They were then asked for their current gender identity and which sex they were assigned at birth on their original birth certificate. An overwhelming majority of respondents agreed that asking about sexual orientation and gender identity on registration forms is important. There were no statistically significant differences in responses to questions based on race or geographic location, although respondents over age 65 were more likely to answer that they did not understand the choices to the gender identity question.

We know that LGBT people experience disparities in health ranging from higher rates of HIV and mental health issues among transgender women and gay and bisexual men to lower rates of routine health screenings among lesbians. We also know that LGBT patients routinely report that they experience discrimination in health care settings related to their sexual orientation or gender identity.

Routine collection of data about patient sexual orientation and gender identity would give health care providers, public health officials and researchers the data they need to more accurately evaluate the quality of health care that LGBT people receive, and help them devise population-wide strategies to reduce these health care disparities. Collecting data about sexual orientation and gender identity can also help foster discussion in the exam room that will result in more accurate assessments of patient health risks.

Put simply, without this information, LGBT people are otherwise invisible in health care, and we will never be able to properly manage the health of the LGBT population without first being able to measure the LGBT population.

We have long understood the value of collecting race and ethnicity data in health care settings in order to measure which populations are accessing health care services, and how often; the health status of various populations; and the effectiveness of public health interventions. Including questions about sexual orientation and gender identity in the standard demographic section of electronic health records is a critical step forward in ending disparities in health experienced by LGBT people.