Enhancing Health Equity: The Importance of LGBTQ+ Data Collection in Health Care

In part 1 of a 3-part feature series on lesbian, gay, bisexual, transgender, questioning (LGBTQ)+ health care, Mandi Pratt-Chapman, PhD, clinical researcher, GW Cancer Center, discussed the need to capture more sexual orientation and gender identity (SOGI) data in health care systems. She argued that diversifying research is important not only for improving clinicians’ understandings of their LGBTQ+ patients but also for identifying the needs of the community and improving care delivery in, for example, cancer screening guidelines.

Pratt-Chapman is not alone in this line of thought as researchers such as Brototo Deb, MD¹; Kellan Baker, PhD,² and others have voiced the benefits and need for better SOGI data collection practices. Part 2 of this series will explore these arguments to present a holistic view of this initiative and highlight a recent policy measure in play to drive SOGI data collection.

Among the primary arguments presented by the CDC in favor of LGBTQ+ data collection, it cited the need to identify disparities and lacking health care services that affect LGBTQ+ people.³ These services can include sexually transmitted infection, HIV screening and prevention, parenting resources, and behavioral health interventions. Presenting LGBTQ+ patients with a welcoming and safe environment to disclose SOGI information, they argued, could additionally foster greater patient-physician trust—a trust that has been historically broken in the LGBTQ+ community (see part 1).

LGBTQ+ representation model | image credit: master1305 - stock.adobe.com

A recent survey conducted by KFF demonstrated how this element of distrust lives on in the present day.⁴ One of the report’s main focuses was the LGBTQ+ community’s experience with discrimination in both their day-to-day lives and health care settings. The survey revealed that, while receiving health care, LGBTQ+ adults report twice as many negative interactions compared with non-LGBTQ+ adults. Listed experiences included times when they felt they were treated unfairly or disrespectfully (33% vs 15%) or had a negative encounter with a provider (61% vs 31%). LGBTQ+ adults recounted times when providers made unwarranted assumptions about them, implied that health issues were the patient’s fault, refused to prescribe necessary pain medication, and ignored direct questions or requests. Additionally, LGBTQ+ adults were far more likely to report negative health care experiences that contributed to their health getting worse (24% vs 9%), led to them changing health care providers (36% vs 16%), and made them less likely to seek out health care in the first place (39% vs 15%). Patients from lower socioeconomic backgrounds reported more instances of discrimination, and the culmination of these challenges has exacerbated mental health issues throughout the community.

A 2024 report from the National LGBTQ Task Force claimed that including more of this demographic data will help make health care more accessible and equitable.⁵ The task force argued that a more comprehensive understanding of the LGBTQ+ community will help inform and guide policy reform, the development of governmental programs, and funding allocations.

In an email interview with The American Journal of Managed Care^® (AJMC^®), Clermon E. Acklin, III, Esq, National LGBTQ Task Force, echoed these sentiments, stating: “There are numerous advantages of implementing LGBTQ+ data methods into policy-making processes. It is important for decision-makers at all levels of government, particularly federal, to understand who and where the LGBTQ+ community is. We know that data [help] inform policies related to things like access to health care, access to housing, and access to federal benefits. LGBTQ+ people must be included in the data that [shape] the policies that have direct and long-term effects on their lives…. Having more and better data on LGBTQ+ populations in the United States helps eliminate stigmatization. Additionally, having richer, disaggregated data gives advocates imperial evidence of what we already know to be true, that the LGBTQ+ community is diverse and widespread. Capturing the full spectrum of intersectional experiences leads to better outcomes for everyone.”

In January 2024, a study published in JAMA Cardiology by Deb et al suggested that these measures could not only guide equitable health efforts but also have an impact on patient outcomes.¹ Here, Deb et al focused on capturing SOGI data to improve the cardiovascular health of LGBTQ+ patients; however, the broader implications of their study indicate how analyzing this data could improve outcomes across the spectrum of health care services, care, surgeries, and more.

Cardiovascular disease, the authors write, is the No. 1 contributor to mortality and morbidity worldwide. Research in this area has identified multiple disparities according to race, sex, and income; however, SOGI data are lacking. This reality is important, they add, because prior studies have indicated that sexual and gender minority (SGM) patients endure worse cardiovascular outcomes compared with non-SGM patients. Increasing efforts to collect SOGI data could both address a pressing need in the LGBTQ+ community and help identify social determinants of health impacting this population.

Deb et al mentioned new regulations from the last decade that showed great progress in SOGI data collection efforts; their implementation mandated that electronic health records (EHRs) affiliated with the federal Meaningful Use Stage 3 Incentive Program keep SOGI records. These initiatives, alongside prior recommendations from the Institute of Medicine, Joint Commission, and the US Bureau of Primary Health Care, Health Resources and Services Administration, contributed to an observed 40% increase in SOGI data capture from 2016 to 2019.

While these efforts constituted the first step toward improving the cardiovascular health of this population, Deb et al outlined barriers that have impeded this progress. Among these obstacles, they listed issues surrounding stigma/discrimination, hesitancy/inexperience by practitioners, improper assumptions/lacking terminology, and anti–LGBTQ+ legislation.

Stigma and discrimination have long impacted the health care of LBGTQ+ patients, especially considering that homosexuality was listed in the Diagnostic and Statistical Manual of Mental Disorders until 1973. As reflected in the aforementioned KFF survey, many LBGTQ+ patients struggle with trusting the health care system. Additional surveys from recent years have supported the reports from KFF and indicated that 56% of sexual minority and 70% of gender minority adults have experienced forms of nonverbal and verbal discrimination in health care settings.¹ In some instances, the result was denial of care. Reflecting on these figures, Deb et al highlighted the need for establishing more welcoming and respectful environments to create more trusting relationships between SGM patients and their providers, which could lead to a higher willingness for patients to share this information.

Prior research has indicated that cities with nondiscriminatory laws meant to protect SGM individuals are more likely to report and collect SOGI data. Deb et al referred to these studies to demonstrate how distrust in the health care system can be exacerbated by anti–LGBTQ+ legislation, which, in turn, can further hinder collection efforts.

Educating practitioners to better facilitate SOGI data capture represents another important venture, Deb et al added. They wrote about practitioners’ reluctance to ask SOGI-related questions for fear of making patients uncomfortable; however, prior studies have presented conflicting conclusions and indicated that many patients are quite open to responding to these questions.

“This disparity between physician understanding of patient attitude and actual patient behavior is partly due to inadequate education and training to approach these questions with sensitivity and respect. There is a paucity of such training in cardiology fellowships regarding the effects of sexual and gender minority identity on cardiovascular health and how to approach and provide care to LGBTQ+ patients in a compassionate and respectful manner,” Deb et al stated.

An approach practitioners can take toward this goal is the adoption of unbiased and neutral language, which Deb et al identified as the “very foundation of LGBTQ+-affirming care.” For instance, rather than referring to a patient’s “wife” or “husband,” the terms “significant other” or “partner” can go a long way in creating a more welcoming environment for SGM patients. “Although separating the population into categories (gay, straight, transgender) provides ease and structure to capturing [SOGI] data,” they contended, “it is vital to recognize that these also exist as spectra and not discrete categories.”

Among the solutions proposed for addressing the disparities in SOGI data collection, of utmost importance is ensuring the privacy of patients. In an interview with AJMC, Deb identified privacy concerns as the “biggest risk” associated with SOGI data collection initiatives. With the widespread mistrust that exists between SGM patients and the health care system, measures such as encrypting patient data, implementing consent procedures, and creating clear lines of communication to make patients aware of where and how their data could be shared could help assuage present concerns. Furthermore, Deb et al argued that practitioners should consider pairing with LGBTQ+ communities when designing and conducting clinical trials. By involving individuals or corporate entities that support this work, a greater proportion of the SGM population could be included in clinical research.

“The most important conclusion from the paper,” Deb expressed to AJMC, “is that SOGI data should be systematically collected within the electronic health records so that this data can be used for clinical care and research for improving cardiovascular and overall health of our minoritized LGBTQIA+ individuals. Currently, there are major EHR systems which don’t collect such data. This needs to be addressed as soon as possible.”

California State Senator Scott Wiener has brought US Senate Bill 957 (SB 957), which requires health agencies to gather SOGI data, into California state legislation. The bill was designed to aid in the identification of existing health disparities and help the state achieve formidable solutions.⁶ The California Department of Public Health (CDPH) was previously criticized for its shortcomings in collecting SOGI data. As a response, SB 957 will mandate that CDPH do the following:

• collect SOGI data from third-party entities, including local health jurisdictions, on any forms or electronic data systems unless prohibited by federal or state law;
• provide an annual report to the public and to the legislature on its efforts to collect, analyze, and report SOGI data;
• improve services or program outcomes for underserved LGBTQ+ communities; and
• allow voluntarily provided SOGI data to be included with the immunization data.

Studies conducted like those by Deb et al, surveys from groups like KFF, and the support of organizations like the CDC, the National LGBTQ Task Force, and others demonstrate how meaningful change for SGM patients can begin within the 4 walls of a doctor’s office. Building more tolerable, equitable, inviting, and respectful health care environments—in many ways—begins with clinicians and can make a world of difference for the patients seeking out care in a system they may not have complete faith in. With these ideals in mind, however, instituting policy-level or legislative changes like SB 957 that include and protect the LGBTQ+ community remain crucial for ensuring that valuable efforts from clinicians and providers become a standard in health care.

References

1. Deb B, Porter K, van Cleeff A, Reardon LC, Cook S. Emphasizing sexual orientation and gender identity data capture for improved cardiovascular care of the LGBTQ+ population. JAMA Cardiol. 2024;9(3):295-302. doi:10.1001/jamacardio.2023.5267

2. Baker K, Medina C. Data equity and LGBTQ populations: why collecting sexual orientation and gender identity data matters. AcademyHealth. April 3, 2024. Accessed May 22, 2024. https://academyhealth.org/blog/2024-04/data-equity-and-lgbtq-populations-why-collecting-sexual-orientation-and-gender-identity-data-matters

3. Collecting sexual orientation and gender identity information. CDC. Updated March 9, 2022. Accessed April 15, 2024. https://www.cdc.gov/hiv/clinicians/transforming-health/health-care-providers/collecting-sexual-orientation.html#content

4. LGBT adults’ experiences with discrimination and health care disparities: findings from the KFF survey of racism, discrimination, and health. KFF. April 2, 2024. Accessed May 9, 2024. https://www.kff.org/report-section/lgbt-adults-experiences-with-discrimination-and-health-care-disparities-findings/

5. Acklin III CE. Understanding intersectional data equity from the sexual orientation gender identity sexual characteristics (SOGISC or SOGI) lens. National LGBTQ Task Force. April 2024. Accessed May 1, 2024. https://www.dataequitycoalition.com/wp-content/uploads/2024/04/Understanding-Intersectional-Data-Equity-From-The-SOGISC-Or-SOGI-Lens_April-2024.pdf

6. Bill requiring collection of LGBTQ health data introduced. Los Angeles Blade. January 24, 2024. Accessed April 15, 2024. https://www.losangelesblade.com/2024/01/24/bill-requiring-collection-of-lgbtq-health-data-introduced/