Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records: Workshop Summary (2013)
Chapter: 6 Closing Remarks
Prior to offering his thoughts, Ignatius Bau, chair of the planning committee, opened the floor for final comments. Barbara Warren said that it was gratifying to see the people in the room working on this issue. She encouraged those who are moving ahead to pilot programs and document their experiences. It will be helpful, she added, to understand what is working and where the challenges are. This will not only help those currently in the field but will assist eventually in disseminating these lessons to others. Kellan Baker of the Center for American Progress cautioned against entering a new regime of “Don’t Ask, Don’t Tell” in health care. He noted that people did 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, but could do both. He encouraged workshop participants 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.” Finally, Kathryn Wetherby from the Substance Abuse and Mental Health Services Administration (SAMHSA) reminded everyone that SAMHSA and other federal agencies are actively working on data segmentation and standardization and she encouraged those working on this issue to let EHR vendors know which data fields would be helpful.
Bau thanked everyone for their participation and then listed the themes that struck him as important during the presentations and discussions:
- 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.
- Though the questions or processes for data collection have room for improvement, data collection should start now to better understand the health care issues experienced by LGBT people.
