Representation of Sexual and Gender Minority People in Patient Nondiscrimination Policies of Cancer Centers in the United States

Authors: Iman K. Berrahou MD1, Ava Snow2, Megan Swanson MD, MPH3, and Juno Obedin-Maliver MD, MPH, MAS4
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  • 1 Department of Obstetrics, Gynecology, and Reproductive Sciences, University of California San Francisco, San Francisco;
  • | 2 Stanford University School of Humanities and Sciences, Stanford;
  • | 3 Department of Obstetrics, Gynecology, and Reproductive Sciences, Division of Gynecologic Oncology, University of California San Francisco, San Francisco; and
  • | 4 Department of Obstetrics and Gynecology, Stanford University School of Medicine, Stanford, California.

Background: Sexual and gender minority (SGM) people are an underserved population who face high rates of discrimination in healthcare, including receipt of cancer treatment. Several national organizations have identified the importance of patient nondiscrimination policies that explicitly recognize SGM people in creating safe healthcare environments. Methods: We performed a web-based analysis of NCI-designated Cancer Centers to evaluate the landscape of patient nondiscrimination policies in major cancer centers with regard to representation of SGM people. Results: We found that 82% of cancer centers had a patient nondiscrimination policy on their website. The most commonly mentioned SGM-related term was “sex” (n=48; 89%), followed by “sexual orientation” (n=37; 69%) and “gender identity” (n=36; 67%). None of the policies included “sex assigned at birth” or “LGBTQ/SGM identity.” Of the policies reviewed, 65% included protections for both sexual orientation and gender identity. Cancer centers with academic affiliations were significantly more likely to have policies that included both of these protections compared with nonacademic institutions (100% vs 79%; P=.005). Conclusions: Our study shows that patient nondiscrimination policies across NCI-designated Cancer Centers are not always accessible to patients and their families online and do not consistently represent SGM people in their content. Because the SGM population is both at higher risk for cancer and for discrimination in the healthcare setting, it is crucial to create inclusive, safe, and equitable cancer care environments for this group. Administrators and clinicians should view the patient nondiscrimination policy as an opportunity to offer expansive protections to SGM people that extend beyond those offered in federal and state laws. Additionally, the patient nondiscrimination policy should be visible and accessible to patients seeking cancer care as a signal of safety and inclusion.

Background

Sexual and gender minority (SGM) people, including but not limited to those who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ), account for approximately 5.6% of the US population, and there are an estimated 1 million LGBTQ cancer survivors living in the United States.1,2 Although it is known that SGM people get cancer, the incidence and prevalence of cancer in this population remain unknown, because no national health surveys or cancer registries routinely and comprehensively collect sexual orientation and gender identity data.3

SGM people experience a disproportionate burden of health and healthcare disparities, which translate to higher prevalence of cancer risk factors.4,5 Previously characterized examples include higher rates of tobacco use, obesity, underinsured or uninsured status, and lower utilization of cancer screening tests.4,5 These disparities are directly and indirectly related to the pervasive discrimination faced by SGM populations, including experiences of discrimination while seeking healthcare.6,7 In a 2009 survey by Lambda Legal, 56% of LGB respondents reported experiencing serious discrimination in healthcare, including being refused care, being blamed for health status, or having a healthcare professional refuse to touch them, use harsh or abusive language, or use excessive force.8 In the 2015 US Transgender Survey, which included >27,000 transgender people, 33% of respondents who saw a healthcare provider in the past year reported having at least 1 negative experience related to being transgender.9 Furthermore, 23% of respondents stated that they did not see a doctor when they needed to because of fear of being mistreated as a transgender person.9

Experiences and fear of discrimination adversely impact the care of SGM patients with cancer and patient-centered outcomes.1012 Examples include underrepresentation of LGBTQ patients in cancer care physical environments (eg, the absence of LGBTQ-inclusive registration forms, signs/brochures, waiting area materials), particularly in stereotypically gendered spaces such as gynecologic or breast oncology practices; fear of disclosing sexual orientation and gender identity data to providers; and a lack of inclusion of LGBTQ patients’ caregivers and support systems in care plans. The impact of discrimination manifests not just during treatment but also during remission, with higher rates of psychologic distress among LGBTQ cancer survivors than their heterosexual cisgender (ie, nontransgender) counterparts.13

The patient nondiscrimination policy serves as an important legal, administrative, and symbolic tool to ensure that patients receive equitable, high-quality healthcare. The function and content of patient nondiscrimination policies vary widely across institutions and may reflect state or federal law or may provide a signal of inclusion in states without LGBTQ nondiscrimination policies. At the federal level, the Affordable Care Act includes Section 1557, the nondiscrimination provision that prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in any hospital or health program that receives federal funds.14 Importantly for the SGM population, the definition of “discrimination on the basis of sex” initially included gender identity at the time of the bill’s passage. Ultimately, the inclusion of gender identity as a protected category under Section 1557 was reversed in August 2020, and neither sexual orientation nor gender identity were specifically protected under federal law.14 Most recently in May 2021, given the US Supreme Court ruling in Bostock v Clayton County and the new federal administration, the Department of Health and Human Services announced their intention to once again enforce Section 1557’s prohibition of discrimination on the basis of sex to include sexual orientation and gender identity.15 State laws vary widely regarding protections for SGM people in accessing healthcare, with some states prohibiting discrimination based on sexual orientation and gender identity and some having no protections at all. The temporal and geographical inconsistencies in protections for SGM people in federal and state nondiscrimination policies create added vulnerability for this population.

Explicitly including protections specific to SGM people in patient nondiscrimination policies signals to both patients and clinicians that SGM people should expect to receive nonjudgmental, equitable care. Several national organizations, including ASCO, have identified the importance of nondiscrimination policies that explicitly recognize SGM people in creating safe healthcare environments.1618

Given that the SGM population is at higher risk for both cancer and discrimination in the healthcare setting, patient nondiscrimination policies at cancer centers are particularly pertinent to this population. Little is known about the content of nondiscrimination policies at cancer centers in the United States and how they reflect inclusion of SGM people. We performed a cross-sectional web-based analysis of NCI-designated Cancer Centers to evaluate the current landscape of nondiscrimination policies in major cancer centers with regard to representation of SGM people.

Methods

Identification of Cancer Centers

We analyzed the patient nondiscrimination policies of cancer centers meeting criteria for the NCI designation in 2019 (supplemental eAppendix 1; available with this article at JNCCN.org). The NCI Cancer Center designation is awarded to cancer centers based on their research, resources, and scientific leadership and is a standardized metric of cancer centers that are leaders in modern standards of cancer treatment. We excluded the NCI-designated Basic Laboratory Cancer Centers, because these are research facilities that do not engage in direct patient care.

Data Collection

From July to September 2020, we performed web-based queries on a standard internet search engine to gather demographic information and to locate the patient nondiscrimination policy for each cancer center. For each cancer center, we recorded the geographic location of the center by US census region (Midwest, Northeast, South, West) and whether the center was affiliated with an academic institution. We recorded each center’s NCI comprehensive designation status, which is awarded for additional breadth and depth of research with substantial transdisciplinary research. We recorded whether the cancer center had received the National LGBT Cancer Network “LGBTQ-friendly designation,” which is awarded by recommendation of LGBTQ cancer survivors for commitment to offering safe, affordable, welcoming care to all LGBTQ people. We also recorded each center’s 2019 Healthcare Equality Index (HEI) score, a national benchmarking tool developed by the Human Rights Campaign (HRC) that evaluates healthcare facilities' policies and practices related to the equity and inclusion of LGBTQ patients. Institutions voluntarily participate in the HEI and scoring ranges from 0 (worst) to 100 (best), with points awarded in the categories of nondiscrimination and staff training, patient services and support, employee benefits and policies, patient and community engagement, and responsible citizenship.

Using web-based queries and hand-searching to locate each cancer center’s nondiscrimination policy, we assessed whether the policy was accessible online and the ease of policy access by tracking the number of clicks needed to find the policy. We also recorded whether the policy was specific to the cancer center or was the policy of its affiliated academic institution.

With regard to policy content, we recorded the inclusion of each of the following terms: “sex,” “gender,” “sexual orientation,” “gender identity,” “gender expression,” “sex assigned at birth,” and “LGBTQ and/or SGM identity.” We also recorded all other terms (“race,” “age,” “national origin,” “skin color,” “disability not otherwise specified [NOS],” “religion,” “socioeconomic status,” “language,” “veteran status,” “ethnicity,” “marital status,” “physical disability,” “culture,” “mental disability,” “insurance status/source of payment,” “ancestry,” “genetic information,” “educational background,” “relationship type,” “immigration status/citizenship,” “medical condition,” “pregnancy,” “insurance type,” “political affiliation,” “job/source of income,” “creed”) in each policy to provide an understanding of the interdependence and interconnectedness of social categorizations, known as an intersectional framework, within the context of patient nondiscrimination policies.19

We identified the cancer centers that included both sexual orientation and gender identity as protected groups in their online patient nondiscrimination policies. These 2 terms were selected because of their particular relevance to the SGM population with regard to enumeration of protections in nondiscrimination policies across federal and state laws. Analyses were performed to determine whether cancer center characteristics impacted the likelihood that policies would contain protections for both of these classes.

Data Analysis

Summary statistics were calculated, and univariate analyses performed to describe the content of patient nondiscrimination policies. Statistical analyses that were used to compare cancer centers with online nondiscrimination policies versus those without online nondiscrimination policies included descriptive statistics and Pearson chi-square test for categorical variables. Additionally, Pearson chi-square test was used to determine the impact of cancer center characteristics on the content of cancer center nondiscrimination policies, specifically with regard to inclusion of protections for both sexual orientation and gender identity. All analyses were performed using STATA, version 16.1 (StataCorp LLC) and used a 2-sided 5% type I error rate. This study was exempt from Institutional Review Board review.

Results

There were 64 NCI-designated Cancer Centers providing direct patient care in 2019, all of which were included in this study (supplemental eAppendix 1). Table 1 shows the characteristics of the cancer centers included in the study, of which 80% (n=51) were awarded the NCI Comprehensive Cancer Center designation, 94% (n=60) were affiliated with an academic institution, 72% (n=46) participated in the HRC HEI, and 56% (n=36) carried an LGBTQ-friendly designation from the National LGBT Cancer Network. With regard to census region, 33% (n=21) of the cancer centers were in the South; the rest were equally divided between the Midwest, Northeast, and West.

Table 1.

Cancer Center Characteristics Overall

Table 1.

We found that 82% (n=54) of cancer centers had a nondiscrimination policy accessible on their website. There was no association between NCI Comprehensive Cancer Center designation status, academic affiliation, HRC HEI participation, LGBTQ-friendly designation, or census region and the presence of an online nondiscrimination policy. Of the cancer centers that had an online patient nondiscrimination policy, 17% (n=9) were specific to the cancer center itself, with the remaining 83% using the policy of their affiliated academic institutions. Four of the 9 cancer centers with nondiscrimination policies specific to their institutions were stand-alone cancer centers without an academic affiliation, and 5 were academically affiliated institutions with nondiscrimination policies specific to the cancer center. It took an average of 2.61 clicks to locate the patient nondiscrimination policy from the cancer center’s homepage.

Figure 1 shows the distribution of protections among centers with patient nondiscrimination policies that were accessible online (n=54). The most commonly mentioned SGM-related term was “sex” (n=48; 89%), followed by “sexual orientation” (n=37; 69%) and “gender identity” (n=36; 67%). None of the policies included “sex assigned at birth” or “LGBTQ/SGM identity.” There were 26 other protected classes mentioned across the 54 cancer centers with online patient nondiscrimination policies. The most commonly mentioned additional terms were “race” (n=53; 98%), “age” (n=51; 94%), “national origin” (n=47; 87%), “skin color” (n=43; 80%), “disability” (n=40; 74%), and “religion” (n=35; 65%).

Figure 1.
Figure 1.

Distribution of protections in NCI-designated Cancer Centers’ online nondiscrimination policies

Note: Values shown are percentages within bar lines and raw numbers next to bar lines.

Abbreviations: LGBTQ, lesbian, gay, bisexual, transgender, and queer; NOS, not otherwise specified; SGM, sexual and gender minority.

aSGM terminology.

Citation: Journal of the National Comprehensive Cancer Network 20, 3; 10.6004/jnccn.2021.7078

Of the cancer centers with online patient nondiscrimination policies, 65% (n=35) included both “sexual orientation” and “gender identity” as protected groups. There was no statistically significant association between NCI Comprehensive Cancer Center designation status, HRC HEI participation, LGBTQ-friendly designation, or census region and the inclusion of protections for both sexual orientation and gender identity in the patient nondiscrimination policy. However, cancer centers with academic affiliations were significantly more likely to have policies that included both of these protections compared with nonacademic institutions (100% vs 79%; P=.005).

Discussion

We performed a cross-sectional web-based analysis of NCI-designated Cancer Centers to evaluate the current landscape of nondiscrimination policies in major cancer centers with regard to representation of SGM people. In our study, we were unable to locate the patient nondiscrimination policy of 18% of NCI-designated Cancer Centers online. This represents an area for improvement, given the importance of the patient nondiscrimination policy as a tool to promote patient safety and inclusion.

We used web-based queries to locate the cancer centers’ patient nondiscrimination policies in an effort to replicate how an LGBTQ patient accessing cancer care might seek and obtain information. Studies suggest that marginalized individuals, including SGM people, who face barriers to accessing healthcare are more likely to rely on the internet to seek out health information for themselves and their loved ones.20 Therefore, a web-based search method may be more likely to reflect the ways that SGM patients interact with cancer centers and their institutional policies. For cancer centers that had an online policy, we were able to access it in an average of 2.61 clicks. Several studies have relied on the number of clicks as a measure of online accessibility, with the “3-click rule” used as the most common benchmark.21,22 Although many centers’ policies were accessible in <3 clicks, 28% were not. Additionally, our behavior as data collectors targeting the nondiscrimination policy likely is not reflective of that of an SGM patient accessing a cancer center’s website, who may require several additional clicks to access the policy. Optimizing ease of finding the nondiscrimination policy on cancer center websites may help SGM people find and assess their comfort receiving care at a particular NCI-designated Cancer Center, particularly given marginalized patients’ reliance upon the internet for healthcare navigation and information.

We found that academically affiliated cancer centers were significantly more likely to have nondiscrimination policies that include protections for both sexual orientation and gender identity compared with nonacademic institutions. Although most patients with cancer in the United States receive care at nonacademically affiliated centers, academic centers are involved in the training of most clinicians in the country and are uniquely positioned to improve care for SGM people through education, research, and patient care.23 This finding, though suggestive of a reassuring trend in training institutions and academic cancer centers in the United States, reveals a need for additional efforts to ensure that nondiscrimination policies are inclusive of SGM patients, with explicit protections for sexual orientation and gender identity at a minimum.

It is important to consider patient nondiscrimination policies in the context of state and federal law, because these determine the minimum required protections that must be covered. Because federal legislation (in particular the Civil Rights Acts of 1964 and 1968 and the Affordable Care Act Section 1557) inconsistently offers specific protections for SGM people, with frequent changes noted as different administrative leaders enter and exit positions of power, it has fallen to states to extend protections to this group.14,15 States vary widely in their extension of protections to SGM people, and there are regional differences in adoptions of protections. For example, although 63% of LGBTQ people in the United States live in the South and Midwest, these are the regions that are least likely to have state legislation protecting this group from discrimination in the domains of housing, employment, public accommodations, and healthcare.24,25 Importantly, state-level discrimination policies have been shown to impact SGM people’s health, with more inclusive policies being associated with, for example, increased medical care utilization and improved psychological well-being.26,27

Representation of SGM people in the patient nondiscrimination policies at cancer centers is an important step toward creating inclusive care environments for this underserved population.16,18 The policy should be easily accessible and widely distributed in many formats. Additionally, cancer centers can develop patient nondiscrimination policies that are more comprehensive and expansive than the policies of their academic affiliates, as well as federal or state law. As an example, sex assigned at birth and LGBTQ/SGM identity were not protected categories in any of the cancer centers’ nondiscrimination policies but could easily be added to provide additional expansions in protections to SGM people. In particular, the inclusion of “sex assigned at birth” provides protections for those who are intersex or whose sex assigned at birth may differ from their gender identity or expression. Additionally, protections for “LGBTQ/SGM identity” reflect a commitment to antidiscrimination based on the lived experience of being an LGBTQ- or SGM-identified person.

Although multiple national organizations assert that patient nondiscrimination policies are a crucial aspect of inclusive care environments for SGM patients, there are no studies that show that the presence of a nondiscrimination policy or staff/faculty trainings positively impact patient experiences or clinical outcomes.28 Rather, the inverse has been shown in many studies: the absence of protective public policies is associated with poorer experiences and health outcomes for SGM people accessing healthcare.2931 There are no data to suggest that one specific aspect of inclusive SGM environment building is singularly the most important. The patient nondiscrimination policy should be considered as a foundational component of the multilevel organizational, structural, and clinical changes that should be implemented in cancer centers to build safe healthcare environments for marginalized patient populations, such as those in the SGM community.32 These potential changes include other protective measures, such as hiring and retaining SGM-identified faculty to facilitate concordant patient interactions; developing resources, clinical spaces, and materials that are inclusive of SGM patients; and collection of sexual orientation and gender identity data in clinical practice.32

The strengths of our study are balanced by its limitations. First, we only captured patient nondiscrimination policies that were available through online searches by 2 separate data collectors, although other centers may have had nondiscrimination policies available elsewhere, including in nonpublicly viewable forums. Next, our study was limited to NCI-designated Cancer Centers; only approximately 3% to 12% of eligible patients receive care at these institutions, with approximately 1,500 non–NCI-designated Cancer Centers treating the remaining patients with cancer in the United States.33 Finally, this study is unable to draw conclusions about the impact of the patient nondiscrimination policy on SGM patient’s experiences or outcomes while undergoing cancer treatment. A study examining whether there is an association between the content of a cancer center’s nondiscrimination policy and patients’ experiences and health outcomes would be an important and valuable focus of future investigation.

Conclusions

SGM people are an underserved and understudied population who face high rates of discrimination in healthcare, including receipt of cancer treatment. Federal and state laws are inconsistent in their extension of protections to SGM people. Our study shows that patient nondiscrimination policies across NCI-designated Cancer Centers are not always accessible to patients and their families online and, similar to state laws, do not consistently represent SGM people in their content. Because the SGM population is at higher risk of both cancer and discrimination in the healthcare setting, it is crucial to create inclusive, safe, and equitable cancer care environments for this group. Administrators and clinicians should view the patient nondiscrimination policy as an opportunity to offer expansive protections to SGM people that extend beyond those offered in federal and state laws. Additionally, the patient nondiscrimination policy should be visible and accessible to patients seeking cancer care as a signal of safety and inclusion.

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Submitted January 05, 2021; final revision received June 21, 2021; accepted for publication June 21, 2021. Published online February 15, 2022.

Author contributions: Study concept and design: Berrahou, Swanson, Obedin-Maliver. Data acquisition: Berrahou, Snow. Manuscript preparation: Berrahou, Snow. Critical revision: All authors.

Disclosures: Dr. Obedin-Maliver has disclosed serving as a consultant for Sage Therapeutics, Ibis Reproductive Health, Folx Inc, and Hims Inc. The remaining authors have disclosed that they have not received any financial consideration from any person or organization to support the preparation, analysis, results, or discussion of this article.

Correspondence: Iman K. Berrahou, MD, Department of Obstetrics, Gynecology, and Reproductive Services, University of California San Francisco, 480 16th Street, 10th Floor, Box 0132, San Francisco, CA 94158. Email: Iman.berrahou@ucsf.edu

Supplementary Materials

  • View in gallery

    Distribution of protections in NCI-designated Cancer Centers’ online nondiscrimination policies

    Note: Values shown are percentages within bar lines and raw numbers next to bar lines.

    Abbreviations: LGBTQ, lesbian, gay, bisexual, transgender, and queer; NOS, not otherwise specified; SGM, sexual and gender minority.

    aSGM terminology.

  • 1.

    Jones J. LGBT identification rises to 5.6% in latest U.S. estimate. Accessed May 31, 2021. Available at: https://news.gallup.com/poll/329708/lgbt-identification-rises-latest-estimate.aspx

    • Search Google Scholar
    • Export Citation
  • 2.

    National LGBT Cancer Network. Cancer and the LGBT community. Accessed May 31, 2021. Available at: https://cancer-network.org/cancer-information/cancer-and-the-lgbt-community/

    • Search Google Scholar
    • Export Citation
  • 3.

    Obedin-Maliver J. Time to change: supporting sexual and gender minority people—an underserved understudied cancer risk population. J Natl Compr Canc Netw 2017;15:13051308.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Johnson SE, Holder-Hayes E, Tessman GK, et al. Tobacco product use among sexual minority adults: findings from the 2012–2013 National Adult Tobacco Survey. Am J Prev Med 2016;50:e91100.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5.

    Lunn MR, Cui W, Zack MM, et al. Sociodemographic characteristics and health outcomes among lesbian, gay, and bisexual U.S. adults using Healthy People 2020 leading health indicators. LGBT Health 2017;4:283294.

    • Crossref
    • PubMed
    • Search Google Scholar
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