REPORT: Data Collection Key To Addressing LGBT Health Disparities

Today the Institute of Medicine released a new report, Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records. This report is a summary of a one-day workshop on LGBT data collection held at the IOM in October 2012, and it presents a variety of viewpoints on collecting these data in health care settings. Ultimately, these viewpoints converge on a common principle: collecting sexual orientation and gender identity data is a crucial component of making sure that LGBT people are getting the health care they need.

The workshop featured 19 presentations from experts in LGBT data collection, officials at the Department of Health and Human Services, providers at the forefront of efforts to appropriately collect and use these data in health care settings, health information technology vendors, and LGBT health advocates. The report compiles these presentations, along with comments from attendees and discussions following each presentation, into five chapters:

  • Clinical reasons to collect data on sexual orientation and gender identity, both from a population perspective and as it applies to an individual’s health care, along with personal stories illustrating the barriers and discrimination that LGBT people experience in health care settings.
  • The role of the federal government in developing methods for collecting sexual orientation and gender identity data in electronic health records and ensuring patient privacy and confidentiality.
  • Describing the experiences of several health care systems in developing and implementing questions on sexual orientation and gender identity and incorporating the data in electronic health records.
  • Issues involved in developing standardized questions for collecting data on sexual orientation and gender identity and examples of questions that have been field tested and deployed in actual clinical settings.
  • Comments from participants and final observations on themes that arose during the workshop.

Among the comments were some from the Center for American Progress’s perspective, which cautioned against entering a new regime of “Don’t Ask, Don’t Tell” in health care and noted that we do not have to choose between preparing patients to disclose their sexual orientation and gender identity and training providers and health staff to elicit this information — we can do both. CAP also emphasized that those working to advance efforts to improve LGBT data collection in clinical encounters need to stay focused on both the training component and the data collection component, so that we arrive at a place where providers know that they should ask and patients feel like they can tell.

Other themes that arose from the workshop and that are summarized in the report include the following:

  • LGBT people experience significant health care disparities, and the Obama administration and HHS are committed to identifying and addressing those disparities through the use of data.
  • To address health care disparities in the LGBT population, it is important to identify and understand the barriers that these Americans face and to determine if nondiscrimination policies meant to eliminate those barriers are truly protecting LGBT individuals when they seek health care in real-world settings.
  • “If you are not counted, you do not count.” The health of every individual depends on disclosing sexual orientation and gender identity, so it is important to educate LGBT people about the need for them to self-identify while at the same time creating a safe environment conducive for doing so.
  • In addition to technical issues about the questions they need to ask their patients, health care providers have their own fears and biases that will require a significant amount of education to address, both on an individual and institutional level.
  • Employee resource groups in an institution can become a powerful and important internal force of change.
  • The use of language in questions about sexual orientation or identity and gender identity is becoming more precise, and that will improve the quality of the resulting data collected using these questions.
  • It is important as a matter of principle that data is always collected through a self-identification process and that there is always an opt-out option available to patients.

It is expected that this report will provide a foundation for further efforts to collect LGBT data in health care settings, in electronic records systems, and in the implementation of the Affordable Care Act.