How HI Professionals Can Help Reduce Healthcare Disparities with SOGI Data

For Jami Woebkenberg, senior director of health information management (HIM) operations at Arizona-based Banner Health, the topic of sexual orientation and gender identity (SOGI) data hits home, as her stepson is gay.

“I know in talking to him that there’s still a lot of stigma,” she says. “We as HI professionals need to do our part to address healthcare disparities that the LGBTQ+ community continues to face.”

Nearly one in four LGBTQ+ people report being in fair or poor health, and members of this community are also at higher risk for mental health issues, suicide, drug and alcohol use, HIV, and sexually transmitted diseases. The Centers for Disease Control and Prevention’s Healthy People 2030, a 10-year plan and framework to improve public health using measurable objectives, specifically addresses the health, safety, and well-being of the LGBTQ+ community, and SOGI data is an important part of the solution.

“SOGI data is important for so many reasons. When combined with anatomical inventory data, it can inform clinical decision support, preventive screenings, and help with population health management,” says Sean Cahill, PhD, director of health policy research at Boston, MA-based Fenway Institute, an interdisciplinary center for research, training, education, and policy development focusing on national and international health issues, especially related to LGBTQ+ communities. “We also want to provide patient-centered care. It’s important for providers to know their patients and their patients’ family support system and potential caregiver network.”

Addressing Healthcare Disparities

Banner Health is beginning to explore how it can leverage SOGI data to address social determinants of health and improve population health management. It all starts with data collection and integrity, says Woebkenberg. “How information is collected in the electronic health record [EHR] drives a lot of these conversations,” she adds.

For example, Banner Health’s EHR vendor provides a structured data option for birth sex, but no such option exists for administrative sex (i.e., the sex with which the patient identifies after having undergone gender-affirming surgery). Physicians can document administrative sex in the patient’s social history, but this part of the record isn’t always accessible to those who need it to inform care, facilitate payment, or provide other necessary services. In addition, as unstructured data, it’s difficult to use it for data-driven decisions and initiatives.

There’s a lot of variation in terms of whether and how EHRs capture SOGI data, says Julie Pursley, MSHI, RHIA, CHDA, FAHIMA, senior director of knowledge and practice at AHIMA. For example, while EHRs strive to collect the structured data in registration systems, there must be a plan for how the data will be used in a more granular way, providing a richer data source for review and analysis.

“Capturing this data—and doing it in a standardized way—should be a priority for every organization because SOGI affects so many things downstream,” Pursley adds. “AHIMA is passionate about data integrity. Every person deserves the very best healthcare, and collecting SOGI data provides organizations with the information they need to treat people as unique individuals.”

Shoshana Goldberg, public education and research director at LGBTQ advocacy group Human Rights Campaign, based in Washington, DC, agrees. “Incorporating SOGI measures into large data collection tools sends a powerful message about visibility and legitimacy,” she says.

Although certified EHRs must include SOGI data fields, currently there are no state or federal mandates to collect this data. The only exception is federally qualified health centers that have been required to report SOGI data to the U.S. Bureau of Primary Health Care since 2016.

However, this may change in the future, says Tabitha Vieweg, assistant director in the department of standards and survey methods for The Joint Commission. “The Joint Commission does not have requirements to collect SOGI data, but we are continuing to monitor the literature for additional resources to help healthcare organizations create processes for SOGI data collection and will re-evaluate the need to create requirements in the future,” says Vieweg.

Meanwhile, AHIMA continues to make strides in the promotion of SOGI data collection. This summer, it will release an updated version of the 2022 Recommended Data Elements for Capture in the Master Patient Index (MPI) that includes the use of SOGI data to promote patient matching in the absence of a national naming convention policy.

This work comes in the wake of the Office of the National Coordinator for Health Information Technology (ONC) Project US@ (“Project USA”) that resulted in the Technical Specification Final Version 1.0 for accurate and consistently formatted patient addresses—again to assist with patient matching. AHIMA worked with the ONC to create a companion guide that includes guidance and best practices to meet the Project US@ Technical Specification.

How HI Professionals Can Help

At the organizational level, health information (HI) professionals play an important role in the collection of accurate SOGI data, says Pursley. Here are three strategies to consider:

1. Communicate with your EHR vendor. Does your vendor currently capture SOGI data? If so, does it do it in a way that enables your organization to address healthcare disparities? If not, what steps will your vendor take to make this happen?

2. Commit to enterprise-wide awareness of the importance of SOGI data. Work with your diversity, equity, and inclusion team to educate everyone in the organization about why SOGI data is important and how the organization plans to use it. “We have to help people get past any personal beliefs they may have and understand why asking for this information is truly the right thing to do for patients,” says Woebkenberg.

For example, there’s a reason why Banner Health differentiates between birth sex and administrative sex. Birth sex ensures the organization is paid appropriately for services rendered—particularly birth sex-specific procedures—while administrative sex ties more closely to the patient experience. Administrative sex, for instance, affects the pronoun staff use to address patients or the sex of the individual with whom a patient might share a room during an inpatient stay. “It all goes back to respecting the patient,” says Woebkenberg. “Registration staff and anyone else who talks to patients should be given iterative education on the importance of treating people with respect.”

Make sure that staff ask SOGI questions of all patients—just as they do questions of age, mobility, medical history, race ethnicity, and more, says Cahill. “You’re trying to ensure everyone gets the care they need,” he says, adding scripts or role-playing exercises can help train staff members to ask SOGI questions.

Staff should also be mindful of the current political and societal climate when asking SOGI-related questions, Cahill notes.

“There’s an onslaught against transgender people happening in our country right now,” he adds. “In a number of states, legislation is being considered that would ban gender-affirming care. People are upset and nervous about disclosing their identity. It doesn’t mean we don’t ask the questions. We just need to be compassionate and understanding.”

3. Create policies and procedures. Policies and procedures should address these critical questions:

• How will your organization define key terms such as sexual orientation, sex, gender, and gender identity? Best practice is to use the United States Core Data for Interoperability definitions.
• What workflows will your organization leverage to capture SOGI data? Demographic information, including SOGI data, flows into the EHR in a variety of ways—not only through in-person registration. For example, organizations may also collect SOGI data through the patient portal, at a kiosk, via community health workers, or other methods, says Pursley. Best practice is to rely on patients to input their own SOGI data through the patient portal or a kiosk, says Cahill. “That’s because it feels more private and confidential to the patient than filling out a paper form and handing it to a receptionist,” he adds.
• How will your organization update SOGI data? For example, organizations need a consistent process to update this information once a patient undergoes gender-affirming surgery or in the event that registration staff make an incorrect assumption. A best practice is to verify the information either through the patient’s driver’s license or photo I.D. or by reviewing the health record, says Woebkenberg.

HIM professionals can—and should—advocate for the collection of SOGI data, says Woebkenberg. “It’s about having integrity in the medical record while also ensuring you’re paid for your services,” she adds. “Leveraging it to address healthcare disparities is equally as important.”

 Lisa A. Eramo is a freelance healthcare writer based on Cranston, RI.