Harnessing SOGI data to advance patient-centered care
While sexual orientation and gender identity (SOGI) data collection informs patient-centered care, it also fuels research efforts to address LGBTQ+ care disparities.
Sexual orientation and gender identity data is critical to ensure patient-centered care, according to Kellan Baker, executive director of the Whitman-Walker Institute.
"LGBTQI+ people have so often been left out of healthcare and been made to feel unwelcome by providers, other staff and health insurance companies that don't cover the care they need," Baker said. "SOGI data are really a foundational element of making sure that everyone is seen."
However, 2023 research shows that SOGI data is missing from upward of 60% of adult EHR records.
Baker noted that while not every healthcare condition is directly related to Sexual orientation and gender identity (SOGI), many aspects of care are. For instance, transgender people require preventive screenings based on their anatomy.
"We all know cancer doesn't discriminate," Baker said. "If you've got the part, you've got to get it checked out, and if your provider doesn't know that you're transgender, it's harder for them to make sure that you get the care that you need."
For example, cervical and breast cancer screening measures formerly included women in a certain age range. However, this gendered language excluded trans men and nonbinary individuals who have a cervix.
For HEDIS Measurement Year 2024, NCQA used the United States Core Data for Interoperability (USCDI) data element "Sex (Assigned at Birth)" to identify individuals for cervical and breast cancer screenings.
"If you have a cervix, you need cervical cancer screening," said Rachel Harrington, assistant vice president of health equity sciences at the NCQA. "Gender is distinct from that."
Beyond patient-centered care, SOGI data collection is critical to driving health equity for LGBTQ+ communities, who face significant disparities across care access, physical health and mental health.
Baker emphasized that population health surveys should include demographics like sexual orientation, current gender and sex assigned at birth to inform health equity initiatives.
Best practices for SOGI data collection
SOGI data collection during patient encounters requires clear communication and proper training, according to Baker.
"Patients want to know what you're going to use the information for," he said. "This is as true of race, ethnicity, primary language disability as it is of sexual orientation or gender. This is about making sure that we see you in the fullness of who you are and making sure that we can provide you with the care you need."
Additionally, staff should receive training on SOGI data collection to ensure they don't unintentionally displace any discomfort they might have onto the patient.
Several studies have found a mismatch between staff's perception of patient willingness to share SOGI data versus patients' willingness to disclose SOGI, Baker said.
"People want to share this information; they want to know that they are safe, and they want to know that the information will be used to benefit them," he said. "Once you meet those criteria, people are fine sharing this information. These are foundational elements of who we are and they're important for care."
Lastly, Baker noted that providers should always inform patients that SOGI disclosure is voluntary.
Using existing resources
When collecting SOGI data, healthcare stakeholders do not need to reinvent the wheel, Baker said.
"There is a very solid evidence base of how to collect these data and to do so in a way that gets us good high-quality data on LGBTQI+ people and on everybody else," Baker said.
Collecting SOGI data is essential to address disparities and ensure all people can trust the healthcare system to take care of their data and their health.
Kellan BakerExecutive director, Whitman-Walker Institute
Harrington echoed Baker, noting consensus-driven resources for SOGI data collection from organizations like Fenway Health and the National Academies.
"Part of reducing stigma is normalizing SOGI data collection as a standard part of care," Harrington said.
Building SOGI data collection into existing infrastructures, such as EHR systems and patient portals, can help normalize this practice and drive quality improvement.
"We use data to understand the experiences of individuals and populations, ensuring they receive the high-quality healthcare and insurance coverage they need," Baker concluded. "Collecting SOGI data is essential to address disparities and ensure all people can trust the healthcare system to take care of their data and their health."
Hannah Nelson has been covering news related to health information technology and health data interoperability since 2020.
