Collecting Sexual Orientation and Gender Identity (SOGI) data in electronic health records (EHRs) is essential to providing high-quality, patient-centered care. Recommended by both the National Academy of Medicine and the Joint Commission, SOGI data collection is needed to measure the quality of care provided to people who identify as LGBTQIA+.
“Lesbian, gay, bisexual, transgender, queer, intersex, asexual, and all sexual and gender minority (LGBTQIA+) people experience health disparities and require care and services tailored to their unique needs. The process of asking all patients about their SOGI empowers health centers to get to know their patients better, and to provide them with the culturally responsive, patient-centered services they need. SOGI data collection also allows health centers to learn about the populations they are serving, and to measure the access to care and quality of care provided to people of all sexual orientations and gender identities.”Source: Ready, Set, Go! Guidelines and and Tips For Collecting Patient Data on Sexual Orientation and Gender Identity (SOGI) – 2022 Update
As of early 2023, collecting SOGI data is now a requirement of the NCQA’s Patient-Centered Medical Home (PCMH) model. The requirement applies to patients over 18yo, and is also recommended for adolescents. This information is voluntary for patients to report, but PCMH practices must attempt to collect it.
In 2016-18, the Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology mandated that all EHRs certified for Meaningful Use Stage 3 be able to record SOGI.
“Although EHR forms and formats will vary, it is critical to collect standardized SOGI data in all health records, including EHRs. Asking these questions and educating the whole care team on the value of collecting this information can improve patient-centered care. Providers who are informed of their patients’ SOGI are better able to provide care that is relevant, specific, and compassionate.”Source: CDC’s Collecting Sexual Orientation and Gender Identity Information
Why SOGI Matters
There are many reasons why SOGI data is essential to collect:
- Misgendering patients causes trauma
- Misgendering patients contributes to erosion of trust in the healthcare system
- Documentation of SOGI information in the EHR can help fight stigma
- Documentation can help set new standards/customs in a system that otherwise oppresses sexual/gender minorities
- Documentation can help triage clinical decision-making (e.g., contraception needs, mental health, cancer, STIs, etc.)
- Documentation can help future QI and clinical researchers to identify and address inequities harming these populations
This is Hard
SOGI can be hard, new, uncomfortable, and awkward for EVERYONE.
- “Attempting to [address gender identity] during a clinical encounter may feel uncomfortable”
- “I think about [this] often and struggle with this. It should become something that I ask everyone, but it hasn’t become something that I routinely do.”
- “[I] rely on assumptions about the majority of their patients”
- “I honestly don’t feel that I have gotten really good about asking those questions”
- “Staff are not often prompted to inquire about GI, which results in their lack of confidence in their ability to inquire”
- “It can feel very awkward…to know when it’s appropriate.”
Gender terms (how you identify):
- Sex assigned at birth
- Gender Identity
- Cisgender, Transgender, Nonbinary
Sexual orientation terms (how/who you love):
- Bisexual / queer / pansexual
Fun fact: The Gender Unicorn pictured above is available in 15 different languages!
Collecting SOGI Data
There is no single best practice set of questions for soliciting SOGI information.
- More detailed information allows for better aggregation, data collection, and disparity identification, and potentially support a more diverse breadth of sexual/gender minorities
- Less detailed information eases the burden on patients, reduces form-overload, and reduces documentation burden, and provides patients more sensitive surveying with added privacy
Patients may have questions:
- Why are we asking these questions?
- Who will see these data?
- How will the data be protected?
- You asked me these questions last year!
How we respond to patients’ questions is important, recognizing that responses will vary among providers:
- Provider: We have begun asking all patients about their sexual orientation and gender identity so we can provide everyone with the best care possible. Can you tell me about yourself?
- Provider: We have begun asking all patients about their sexual orientation so we can provide everyone with the best care possible. Do you consider yourself straight, gay, lesbian, bisexual, or something else? I can explain what these terms mean if you have questions, or you can choose not to answer.
- Check out this video for tips on best practices!
Considering the above, many questions remain on best practices for SOGI data collection:
- How should we best distribute the roles/steps in data collection?
- What is our role as clinicians in educating others (e.g., older patients, different cultural backgrounds, non-English speaking patients, etc.) about SOGI?
- How do we navigate privacy for teenagers? (e.g., chart visibility to parents/caregivers)
- How do we avoid profiling?
- SOGI data collection is essential for improving healthcare
- Collecting SOGI data can be challenging for a number of reasons, requiring training and practice
- How we address patients’ questions on this topic is an essential step in building a trusting physician-patient relationship
Blog post based on Med-Peds Forum talk by Anu Goel, PGY2, and Rebecca Raymond-Kolker, PGY2