Enhancing Cancer Care: SOGI Data Collection for Sexual and Gender Minority Patients Remains Critical

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With a tense sociopolitical climate facing sexual and gender minority (SGM) individuals in the United States, avoiding sexual orientation and gender identity (SOGI) data collection with patients can feel like a safer approach than the contrary. Oncology professionals (OPs) may be afraid of offending patients by asking targeted SOGI questions and bringing up what can feel like a difficult subject.¹ However, for SGM patients, their SOGI information may not feel like a difficult subject but a normal part of their everyday lives.¹ Furthermore, if approached tactfully, SOGI data collection may open up an opportunity for SGM patients to share an aspect of their life and/or identity with OPs that they derive great joy and/or pride from. It can also be an opportunity for the OP to signal to SGM patients that they are in a safe environment, which may help to encourage retention.

In an analysis of patient and provider perspectives on SOGI data collection in health care settings published in LGBT Health, Maragh-Bass et al explain that of 429 providers (60% women and 71% White), 80% were concerned that collecting SO data would offend patients, whereas only 11% of 1516 patients (64% White) reported that they would be offended.¹ Additionally, in data from 1 study of 291 SGM patients, investigators found that 79% self-disclosed their identity to a cancer health care provider, sometimes as a way to correct assumptions of a heterosexual identity.² According to Maragh-Bass et al, patients commonly indicated that they perceived benefits of disclosing their SOGI information to providers, noting individualized care as a key benefit. For providers who engaged in SOGI data collection, a primary benefit was improved patient-provider interaction.¹

A minority population, 7.6% of US adults identify as SGM in the United States in 2024, which includes identifying as lesbian, gay, bisexual, transgender, queer or questioning, intersex, asexual, and other identities (LGBTQIA+).³ However, this current figure has increased from 5.6% in 2020 and 3.5% in 2012.3 Additionally, more than one-fifth of Generation Z adults identify as LGBTQIA+, with implications for ongoing shifts in the number of LGBTQIA+ adults in the country.³

In 2024, disproportionate rates of certain cancers continue to exist among older SGM adults.⁴ This may be because of cancer-related health care disparities, including low rates of cancer screening, high rates of anal cancer, high rates of cervical cancer, and greater cancer risk because of higher rates of smoking.^5,6 SGM individuals may also face a number of cancer-related challenges that remain underinvestigated.⁵ For example, findings from 1 study showed that lesbian patients with breast cancer may have greater disease-specific mortality.⁵ Further, SGM patients with breast cancer have been shown to be diagnosed at later stages and at younger ages than heterosexual/cisgender (H/C) counterparts.⁶ In addition to higher cancer risk and high rates of later-stage cancer diagnoses, SGM patients also experience lower satisfaction with their cancer care, more distress during survivorship, care delays, and unmet patient-provider communication needs.⁷ SGM patients with prostate cancer have been reported to experience greater psychological distress and sexual dysfunction following treatment than H/C patients with prostate cancer. SGM patients with cancer also reported that providers have questioned their decisions to pursue gender-affirming treatment, which has significant implications for retention and follow-up.⁶ Findings from these studies help to highlight not only the need for SOGI data collection but also its relevance to oncology care and practice.

According to Kamen et al in findings from a 2022 study published in JCO Oncology Practice, 40% of American Society of Clinical Oncology (ASCO) members inquire about SO whereas 46% inquire about GI.⁶ Additionally, approximately one-third of ASCO members reported no institutional data collection of SO or GI data (34% and 32%, respectively) and the remainder were unsure about collecting SO or GI data (21% and 17%, respectively).⁶ However, a significant number of ASCO members noted that they felt SO and GI data collection was important for quality care (77% and 85%, respectively).⁶ For ASCO members who noted significant SOGI data collection at their institution, leadership support (SO OR, 8.01; GI OR, 6.02), having resources for SOGI data collection (SO OR, 10.6; GI OR, 18.7), and respondents’ belief that SOGI data collection is important (SO OR, 4.28; GI OR, 2.76) were key factors.⁶

Additionally, less than 20% of National Cancer Institute Community Oncology Research Program (NCORP)–affiliated practices were found to regularly collect SOGI data, according to Mullins et al in findings from a 2023 study published in Cancer Medicine.⁷ Notably, not understanding the role of SOGI data in oncology care contributed to a cisgender/heteronormative culture in the practice.7 At the clinic level, this culture was found to translate to a lack of processes and policies in place to encourage SOGI data collection, and at the care team level, SOGI data’s perceived irrelevance to oncology care was often found to be related to OP discomfort about asking patients about SOGI as well as fear of patient discomfort and limited awareness of the presence of SOGI data in electronic health records.⁷

“We know from [findings from] several studies that providers’ fears [of patients becoming offended by SOGI data collection] are essentially unfounded, because patients will generally disclose their demographics if asked, particularly when context is given around why we’re asking. One of the more pervasive and significant problems among clinicians is augmented by a cis[gender]/heteronormative framework that does not connect sexual orientation and gender identity back to social determinants of health,” Maya Leiva, PharmD, BCOP, APh, said in an interview with Pharmacy Times. Leiva is hematology/oncology clinical pharmacy specialist at Schar Cancer Institute as part of Inova Health System, associate professor of hematology and oncology pharmacy practice at West Coast University, lead advanced practice pharmacist at BASS Medical Group, clinical pharmacy leader at the US Department of Health and Human Services (HHS) Administration for Strategic Preparedness and Response, and Pharmacy Practice in Focus: Oncology editorial advisory board member.

Mullins et al noted that much of the lack of focus on SOGI data collection in oncology care stems from perceptions that SOGI data do not influence care quality.⁷ However, the Joint Commission, National Academy of Medicine, HHS, and ASCO all provide guidance on SOGI data collection and note that collection of these data is essential to address disparities, inform solutions, and prioritize cancer control interventions for this population.⁷ Additionally, the National Institutes of Health; National Academies of Sciences, Engineering, and Medicine; American Medical Association; and ASCO have all called for OPs to provide increased attention to SGM patients.⁶ Specifically, in 2017, ASCO released a position statement focusing on 2 pillars to improve SGM cancer care.⁸ First, ASCO advocated for SOGI data collection and use of SGM-relevant data for cancer care quality improvement.⁸ Second, ASCO noted that a critical component of SGM cancer care is ensuring prompt follow-up and continuity of care. To allow for this, ASCO noted that it is necessary to address barriers such as SGM patients’ mistrust of OPs.⁸

In 2017, NCORP conducted a survey of community oncology practices and found that only 10% were collecting SO data whereas 23% were collecting GI data beyond male/female.⁸ A 2022 update to this survey showed that 42% of community oncology practices were now collecting SO data whereas 58% were collecting GI data.⁸ There is notably a steady increase, which highlights the value of the attention that has been paid to SOGI data collection since 2017 in order to deliver high-quality care.⁸

However, despite an increase in SOGI data collection, the results may not be reflected yet in SGM patient experience. When 3700 SGM patients were queried regarding their cancer care experience in the National LGBT Cancer Network’s online OUT survey, 81% of respondents reported that they felt they were respected and 89% felt welcomed during their cancer journey.⁸ However, although 87% of respondents felt their cancer center was safe for SGM patients, more than 10% of SGM patients did not feel safe themselves.⁸ The report also showed disparities were present in crucial areas, such as discussions of fertility preservation, with more than 80% of SGM respondents noting they failed to recall any fertility discussions during their cancer care journey.⁸

Mullins et al suggest several solutions, including normalizing the process of asking SOGI questions among OPs, providing patients with privacy to complete SOGI data collection forms, and clarifying the clinical relevance of SOGI data collection to OPs.⁷ Additionally, Mullins et al note that it may be necessary to further clarify how SOGI data collection can improve patient experiences and inform care, with a specific focus paid toward addressing OPs’ underlying discomfort about engaging in discussions of SOGI.⁷ Furthermore, Mullins et al explained that oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies.⁷

“I hope that with continued emphasis and education, oncology pharmacists can help further normalize and encourage SOGI data collection,” Leiva said in the interview. “We often have a unique opportunity to act as topic ambassadors for our colleagues and patients, whether accidental or in a more formal setting. From curbside consultations to pharmacy conferences, we can inspire others to think about new ways to solve an old problem, learning everything we can about our most vulnerable patients.”

References

1. Maragh-Bass AC, Torain M, Adler R, et al. Risks, benefits, and importance of collecting sexual orientation and gender identity data in healthcare settings: a multi-method analysis of patient and provider perspectives. LGBT Health. 2017;4(2):141-152. doi:10.1089/lgbt.2016.0107

2. Kamen CS, Smith-Stoner M, Heckler CE, Flannery M, Margolies L. Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers. Oncol Nurs Forum. 2015;42(1):44-51. https://pubmed.ncbi.nlm.nih.gov/25542320/

3. Jones JM. LGBTQ+ identification in U.S. now at 7.6%. Gallup. March 13, 2024. Accessed May 22, 2024. https://news.gallup.com/poll/611864/lgbtq-identification.aspx

4. Alexander K, Walters CB, Banerjee SC. Oncology patients’ preferences regarding sexual orientation and gender identity (SOGI) disclosure and room sharing. Patient Educ Couns. 2020;103(5):1041-1048. doi:10.1016/j.pec.2019.12.006

5. Cathcart-Rake EJ, Zemla T, Jatoi A, et al. Acquisition of sexual orientation and gender identity data among NCI Community Oncology Research Program practice groups. Cancer. 2019;125(8):1313-1318. doi:10.1002/cncr.31925

6. Kamen CS, Pratt-Chapman ML, Meersman SC, et al. Sexual orientation and gender identity data collection in oncology practice: findings of an ASCO survey. JCO Oncol Pract. 2022;18(8):e1297-e1305. doi:10.1200/OP.22.00084

7. Mullins MA, Reber L, Washington A, et al. Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices. Cancer Med. 2023;12(18):19203-19214. doi:10.1002/cam4.6517

8. Kamen CS, Dizon DS, Fung C, et al. State of cancer care in America: achieving cancer health equity among sexual and gender minority communities. JCO Oncol Pract. 2023;19(11):959-966. doi:10.1200/OP.23.00435