The California Dialog on Cancer is collaborating with national and state registries to include SOGI data. A recent survey found that 40% of California Cancer Care clinics don't collect SOGI data, and those that do, rarely incorporate it into patient records. This underscores the need for LGBTQ+-competent information technology (IT) and health data professionals who are LGBTQ+ competent to ensure the proper implementation of SOGI data collection among these vital services. This is particularly concerning in Cancer Care settings within California’s more rural and Southern regions, where BIPOC LBTQ people more often live within unaccepting communities with fewer LGBTQ+ resources than their peers who reside in Los Angeles or San Francisco. While the lack of SOGI data collection is particularly concerning within Cancer Care Clinics, it is a widespread issue among most medical and mental health providers.

Cancer rates and stages of diagnosis are monitored in California and federally through state and federally-funded Cancer Registry systems. These systems do not include the data options to collect or track cancer cases by SOGI identities, because cancer registries do not have access to this data due to a lack of SOGI data collection in medical care. Most rely on data collected from local cancer care providers, like Cedars-Sinai Medical Centers, and LGBTQ+ targeted surveys which all indicate that LGBTQ+ people are more likely to receive a late-stage cancer diagnosis than their heterosexual/cisgender peers. This directly correlates to the mistrust of medical providers among LGBTQ+ people, a direct result of discrimination, bias, and microaggressions often faced at medical visits.

SOGI is defined as sexual orientation and gender identity. You may also see the term SOGIE, which refers to sexual orientation and gender identity and expression. Every individual has a unique SOGI that impacts their lived experiences. Collecting this information—in whatever form a person wishes to share with others—is important to delivering inclusive, intersectional healthcare services that take into consideration how these lived experiences shape personal history and identity and how they ultimately affect the way an individual successfully receives services and interacts with facility environments. Having a thorough understanding of each element of SOGI is vital to improving your organization’s SOGI practices.

• Sexual Orientation: Your identity in relation to your primary emotional or physical attraction to others
• Gender Identity: The gender you feel you are on the inside, which is separate from the sex you were assigned at birth
• Gender Expression: The unique ways in which you choose to embody or convey your sexual orientation and gender identity

Appropriate times to ask SOGI questions include during the standard intake process after someone has been admitted to your community, in counseling meetings, or during healthcare intake sessions. Intake demographics often begin with questions about sex, asking if a person is either male or female. But they rarely include gender identity or make it clear that questions about sex are really asking about the sex others assigned to us at birth. They don’t often gather details about sexual orientation and gender expression, and typical options for relationship status rarely go beyond single, married, and divorced. Failing to recognize the wide spectrum of SOGI that impacts all of our lives is not in the best interests of clients, residents, and patients during intake, or their friends and family members who may facilitate the process.

Understanding SOGI is the first step in creating a more inclusive intake experience, but why is SOGI important? For several reasons. Many people, in particular those of older generations, are afraid of the negative reactions or consequences that may come with outwardly identifying as members of the LGBTQ+ community.

When healthcare organizations offer a safe, optional opportunity to share SOGI information, they signal that they recognize and affirm the intersectional identities of all individuals, including LGBTQ+ older adults. And the impact of that for a business goes well beyond an individual’s time in the intake phase.

Top Benefits of SOGI Data Collection

• Collecting SOGI data can help meet organization requirements and measure the level of care access and quality that your team provides to populations
• Gathering SOGI demographics can be critical to patient care plans, organization decision-making, and general service improvement initiatives
• SOGI data can offer a more holistic view of clients to build rapport, avoid operating on assumptions, and determine what support they need
• Showing you understand the importance of SOGI as part of a person’s history and sense of identity sends a welcoming message to new community members
• Inclusive intake experiences can help older adults feel accepted and comfortable forming positive, healthy relationships with new living spaces, staff, and peers
• Recognizing SOGI can help employees feel safe deepening workplace relationships and delivering productive, high-quality services
• Strong inclusive practices can impact your business’s identity, showing prospective employees that you are a welcoming workplace for top talent
• Improving inclusivity can reduce harassment and gossip in your community and among employees, making it clear certain behaviors are not tolerated

If your organization would like to receive technical assistance (TA), Receive trainings focused on SOGI Information, or access SOGI data resources, we’re here to help!

Please fill out this form to express your interest and we'll reach out with more details.

Educational Materials

• LBTQ Project one-pager
• Why Does SOGI Data Matter-Quick Guide
• When and How to Use SOGI Data-Quick Guide
• Best Practices for SOGI Data Collection

This list of resources provides an overview of current SOGI information materials. These offer valuable context on existing SOGI data information and training approaches.

• Vanessa Goes to the Doctor - an informational video that demonstrates LGBT-affirming and unwelcoming practices in a medical practice
• Improving Demographic Data Quality
• Resources for SOGI Data Collection
• The U.S. Department of Health & Human Services SOGI Data Action Plan
• Podcast Series: Collecting Data on SOGI, and Expression in Child Welfare
• National Institute of Health - Sexual & Gender Minority Measurement & Data
• Federal Evidence Agenda on LGBTQIA+ Equity
• California Department of Health Care Access and Information's Hospital Equity Data Toolkit

The LBTQ Health Equity Initiative is guided by an Advisory Committee comprised of various LBTQ leaders from across California to support advancing SOGI Data collection within their respective agencies and advocacy roles. The Advisory Committee plays a pivotal role in providing their expertise in LBTQ policy, health care, and technology. Additionally, they assist in the development of community surveys, reviewing educational materials and outreach efforts, and training development.

We deeply value their insights, contributions, and commitment to advancing equity through this vital initiative. Together, we’re shaping a more inclusive future for LBTQ communities.

• Maggie Hawkins, MPH, CHES | LYTE Foundation Inc.
• Alexandra Caro | Cedars-Sinai Cancer
• Amanda Levy | California Department of Managed Health Care
• Crystal Salaiz-Flores
• Diana Venegas Hernandez | UCLA
• Dorian Rodriguez | Department of Health Care Access and Information. (HCAI)
• Eve Banas | Sacramento LGBT Community Center
• MacArthur Henry Flournoy IV, MDiv
• Mars Cruz
• Mata Finau | Southern California HIMSS
• Phoenix Shetty | Department of Health Care Services
• Phyra McCandless | Department of Managed Health Care
• Sean Arayasirikul | The LEgacy Center (TLC) at the University of California Irvine