Asking Because We Care: Why SOGI Data Is Essential to Equitable Cancer Care

Asking Because We Care: Why SOGI Data Is Essential to Equitable Cancer Care

LGBTQ+ patients experience disparities across the cancer care continuum — but without systematic collection of sexual orientation and gender identity data, those disparities remain difficult to measure and nearly impossible to address. Tiffany Go, MPA, CPCHE, Senior Manager of Health Outcomes at Fred Hutchinson Cancer Center, makes the case for standardized SOGI data collection and shares how her institution is putting it into practice.

Introduction: Why SOGI Collection Matters Now

The intent of this commentary is to reflect on the experiences of LGBTQIA+ communities while examining how healthcare systems and data intersect with those realities. These experiences are not isolated—they reflect broader gaps in how healthcare systems capture and use identity data to inform care. While the political and policy landscape is complex, the central question is clear: how do we move forward in ways that reduce harm and ensure just, equitable care for all?

To ground this perspective, I’ll share a personal story that has shaped my awareness and deepened my understanding of the complexities facing LGBTQIA+ communities. Someone I care deeply about came out as nonbinary several years ago. In those early moments, I was getting it wrong. I was awkward when I misgendered them and felt an overwhelming feeling of embarrassment and shame. Instead of frustration or judgment, they offered patience, guidance, and grace. I kept trying; yes, I made mistakes and misgendered them, but eventually with practice and time, I was getting it right. This experience and friendship not only strengthened my commitment to do better personally, but to lead differently—to help create systems of care that reflect dignity, respect, and compassion for LGBTQIA+ individuals.

That commitment deepened as I watched this loved one navigate the healthcare system. They shared how difficult it was to be seen and addressed as who they are, and how often they encountered confusion, misgendering, and care environments not built with them in mind. They described the emotional toll of having to repeatedly correct providers, explain themselves, and advocate for appropriate care. But they also shared what it felt like when a provider got it right—when they were accurately addressed and asked the right clinical questions. Their care felt safe, affirming, and effective.

Hearing both sides of their experience stayed with me. I saw how much additional effort was required just to receive the kind of care many of us take for granted. For many patients, identity and anatomy are never questioned in ways that create barriers. But for LGBTQIA+ individuals, that added burden—to correct, educate, and navigate—can turn even routine care into something exhausting and, at times, harmful. That is not the experience we should accept for any patient.

LGBTQIA+ populations experience disparities across the cancer care continuum, yet these differences remain difficult to measure due to limited data collection. [1,2]

How SOGI Data Improves Care and Health Outcomes

Collecting sexual orientation and gender identity (SOGI) data is foundational to identifying and addressing disparities in cancer screening, treatment, and outcomes [1,2]. Without it, we lack critical information needed to deliver the right care at the right time. Accurate SOGI data supports earlier screening, more precise diagnoses, and care that reflects each patient’s clinical needs and lived experience [2]. SOGI data also helps reduce misgendering and harmful assumptions that shape patient experiences. When done well, it enables more thoughtful care planning—ensuring patients receive not only appropriate clinical care, but also services and supports that reflect who they are [4].

At its core, this work is about trust. LGBTQIA+ communities report experiences of discrimination, discomfort and avoidance of care due to poor experiences or bias in healthcare. [5] At the same time, evidence shows that affirming practices like using the correct pronouns and asking about identity respectfully improves patient trust and engagement in care. [6]

LGBTQIA+ patients must feel safe sharing who they are. That trust is built through respectful engagement and consistent, affirming practices [5]. It is important to recognize: the absence of SOGI data is not neutrality, it is invisibility. National recommendations reinforce that standardized SOGI data collection is essential to identifying disparities and improving care delivery. And invisibility limits our ability to identify disparities, respond effectively, and deliver equitable cancer care.

The “How”: What Thoughtful SOGI Data Collection Looks Like in Practice

Successful SOGI data collection relies on a few essential elements: standard processes, validated questions, clear staff training, and transparency about why the data are being collected.

Any demographic collection effort must remain patient-centered. National recommendations underscore that SOGI data should be voluntary, self-reported, with declinations accepted as valid responses and approaches upholding confidentiality in alignment with HIPAA standards [8]. Just as important, organizations must actively prevent identity policing—the harmful practice of questioning or invalidating a patient’s identity. Some hospitals use frameworks like We Ask Because We Care, which emphasize transparency, purpose, and trust. When intent is clearly communicated, patients are more likely to engage, and the data becomes more meaningful. This strengthens care across the continuum.

While asking about sexual orientation and gender identity may feel uncomfortable for staff, research consistently shows that patients are willing to share when questions are asked respectfully and with clear purpose [7]. High levels of patient acceptability have been demonstrated across diverse healthcare settings, particularly when transparency and choice are emphasized. [3]

The most important first step is simply to begin. A small pilot allows organizations to test workflows, gather feedback, and refine their approach before scaling thoughtfully and sustainably. Best practices supports multimodal approaches to data collection such as patient portals, intake forms, and clinical conversations to increase completion rates while preserving patient comfort and autonomy. [6]

Case Example: How We’re Doing This at Fred Hutch Cancer Center

At Fred Hutchinson Cancer Center, this work has been intentionally developed over time through pilot testing and community-informed design. Since early 2025, that commitment has translated into a more structured approach to better understanding and serving our patients.

Over several years, we piloted SOGI data collection across multiple clinics, partnering closely with frontline staff, providers, and LGBTQIA+ community members. These pilots helped us design a patient-centered workflow with multiple points of collection—from intake through the exam room—so patients can share information in the way that feels most comfortable.

We introduced a questionnaire through the patient portal prior to the first visit. For those without portal access or who prefer not to complete it in advance, a paper version is provided at intake. Patients can complete it independently for staff to enter, bring it into the exam room for clinical staff to document, or discuss SOGI directly with their provider.

By offering multiple options, we distribute responsibility across the care team while prioritizing patient choice and comfort. Once collected, this information is not repeatedly requested. This is a “one-and-done” approach unless a patient chooses to update it.

We grounded this work in the We Ask Because We Care campaign and partnered with marketing, communications, and our Patient and Family Advisory Council to ensure patients understand why this data matters. Patient feedback—and strong executive leadership support—were critical to success. Today, all new patients are offered the SOGI questionnaire, giving us a more complete understanding of who we serve and allowing us to better tailor care.

You Can Do This Too: Building Confidence Across Institutions

SOGI data collection is feasible across settings—hospitals, clinics, large systems, and small practices alike. What matters most is a willingness to start. Start small, learn quickly, and build with intention.

Key first steps include leadership buy-in, pilot implementation, and meaningful partnership with LGBTQIA+ stakeholders, including staff, patients, and community members. These voices are essential to designing processes that are both effective and respectful.

Discomfort should be expected—but it should not be a barrier to action.

Call to Action: Choosing Courage Over Comfort

Beyond the clinical rationale for collecting SOGI data, there is a clear ethical imperative. National consensus reports highlight that equitable data collection is essential to identifying disparities, informing policy, and improving care delivery for LGBTQIA+ communities [8]. LGBTQIA+ individuals deserve to be recognized, affirmed and cared for in systems that know their identities as essential to their health. Without accurate data, we limit our ability to understand or address inequities in care [1]—and the consequences can be profound.

This work is not just about what we must do, it is about what is already possible.

I think about my friend often. They shaped not only how I show up as a person, but how I lead. When we collect SOGI data today, I think about what happens next: how we ensure that it is not just captured, but used to create care experiences that are inclusive, safe, and truly patient-centered.

I have also seen what happens when organizations commit to this work. Culture begins to shift. Staff include their pronouns in email signatures, on badges, and in introductions. Teams take the time to confirm information in the chart because accuracy matters. When we miss the mark, and we sometimes do, staff speak up and share those moments because they want to do better for our patients. This is the expectation now. This is the standard of care.

This is how change happens. Not all at once, but through consistent, intentional actions that build trust and accountability. These changes do not stay within a single clinic or hospital, they ripple outward, shaping expectations and experiences across the system.

This moment calls for action and confidence. Advancing data-informed equity requires commitment at every level of healthcare. It asks us to choose intention over avoidance, to move through discomfort, and to build systems that reflect both clinical excellence and human dignity.

We should not need a personal connection to understand the importance of this work. Providing equitable, affirming care is not optional—it is a fundamental responsibility. When we choose to act with intention, we transform not only how care is delivered, but how it is experienced.

References

1. Quinn GP, Sanchez JA, Sutton SK, et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin. 2015;65(5):384-400. doi:10.3322/caac.21288
2. Boehmer U, Miao X, Ozonoff A, Jiang Y. Cancer survivorship and sexual orientation. Cancer. 2011;117(16):3796-3804. doi:10.1002/cncr.25998
3. Cahill SR, Singal R, Grasso C, et al. Do ask, do tell: High levels of acceptability of routine sexual orientation and gender identity data collection. PLoS One. 2014;9(9):e107104. doi:10.1371/journal.pone.0107104
4. Cahill SR, Makadon HJ. Sexual orientation and gender identity data collection in clinical settings and electronic health records. JAMA. 2014;312(1):23-24. doi:10.1001/jama.2014.3061
5. Reisner SL, Poteat T, Keatley J, et al. Global health burden and needs of transgender populations: A review. Lancet. 2016;388(10042):412-436. doi:10.1016/S0140-6736(16)00684-X
6. Triplette M, Giustini N, Anderson N, Go T, Scout N, Heffner JL. A multistakeholder qualitative study to inform sexual orientation and gender identity data collection in the cancer care setting. LGBT Health. 2024. doi:10.1089/lgbt.2024.0065
7. Haider AH, Schneider EB, Kodadek LM, et al. Emergency department query for patient-centered SOGI data collection: The EQUALITY Study. Ann Emerg Med. 2017;70(6):791-798.e3. doi:10.1016/j.annemergmed.2017.03.032
8. National Academies of Sciences, Engineering, and Medicine. Measuring Sex, Gender Identity, and Sexual Orientation. National Academies Press; 2022. doi:10.17226/26424
9. Institute of Medicine. The Health of Lesbian, Gay, Bisexual, and Transgender People. National Academies Press; 2011. doi:10.17226/13128
10. Grasso C, Goldhammer H, Funk D, King D. Required sexual orientation and gender identity reporting by US health centers. Am J Public Health. 2019;109(8):1111-1118. doi:10.2105/AJPH.2019.305130
11. U.S. Department of Health and Human Services. Healthy People 2030: LGBT Health. https://health.gov/healthypeople

About the Author

Tiffany Go, MPA, CPCHE is Senior Manager of Health Outcomes at Fred Hutchinson Cancer Center and a Certified Professional in Clinical Health Equity (CPCHE). She leads enterprise efforts to advance health equity across clinical care and oncology research. She directs initiatives to reduce disparities, expand access to clinical trials, and strengthen equity measurement and accountability, including the piloting and scaling of sexual orientation, gender identity, and pronoun data collection to improve patient data accuracy. Tiffany serves as Staff Co-Chair of the Fred Hutch Patient Needs and Outcomes Council and partners across clinical, research, and executive leadership to embed equity into strategy, policy, and care delivery.