Human Rights Campaign Comments on Draft USCDI v5
A .pdf copy of the comments below with inline footnotes is available here (https://drive.google.com/file/d/1whiZLltgklFP1BcyPKIenxeO-SagIJJn/view). Thank you.
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On behalf of the Human Rights Campaign’s more than three million members and supporters nationwide, we write to offer our support for Draft Version 5 of the United States Core Data for Interoperability (“Draft USCDI v5”), which was recently made available for public comment by the Office of the National Coordinator for Health Information Technology (ONC).
The Human Rights Campaign (HRC) is America’s largest civil rights organization working to achieve lesbian, gay, bisexual, transgender, and queer (LGBTQ+) equality. By inspiring and engaging all Americans, HRC strives to end discrimination against LGBTQ+ citizens and realize a nation that achieves fundamental fairness and equality for all.As advocates for LGBTQ+ individuals, we believe that all people—including LGBTQ+ people—deserve to be able to meaningfully access medical care. Likewise, we believe that more reliable, quality data that allow for disaggregation by sexual orientation, gender identity, variations in sex characteristics, race, ethnicity, disability, age, and other key demographic variables are needed so we can better understand and support those living at the intersections of multiple marginalized identities.
Unfortunately, we are currently living through a state of emergency wherein various forms of essential, life-saving care and services for transgender and other LGBTQ+ populations are being increasingly restricted and even criminalized at the state level.We therefore commend ONC for its Draft USCDI v5, which mandates the collection of various data elements that providers must be able to exchange and which we believe will allow LGBTQ+ patients to transfer their care more easily to other providers as necessitated by these shifts in law and policy. Likewise, we believe that data collected consistent with these proposed data elements will generate valuable insights on the health and well-being of LGBTQ+ patients that could in turn inform providers’ efforts to improve equity among those populations. We therefore write to express our support for same being finalized as soon as possible.
Research on LGBTQ+ People and Their Health Outcomes
LGBTQ+ people are a growing population in the United States, living in every state and county and reflecting the breadth of diversity and lived experiences of the communities in which they live.Using data collected through the U.S. Census Bureau’s Household Pulse Survey, we have previously estimated that at least 20 million adults in the U.S. identify as LGBTQ+.[1] Consistent with others’ research, we have also found that younger people are more likely than older people to identify as LGBTQ+.[2]Some researchers estimate that the population of LGBTQ+ adults in the U.S. over the age of 50 will double to over 5 million adults by 2030.[3]
LGBTQ+ people in the U.S. are a demographically diverse population, with the Williams Institute using Gallup Daily Tracking survey data from 2012–2017 to estimate that 58% of LGBT adults identify as female.[4] Likewise, they found that 42% of LGBT adults identify among communities of color, including 1% that identify as American Indian and Alaska Native.[5] The Williams Institute also recently reported on evidence that individuals belonging to certain communities of color appear more likely than their White counterparts to identify as transgender.[6]
Studies have long documented persistent negative health outcomes among LGBTQ+ populations, including disparities in their physical and mental health when compared to their non-LGBTQ+ counterparts.[7] For example, data from the Centers for Disease Control and Prevention’s Behavioral Risk Factor Surveillance System indicate that LGBTQ+ adults, and transgender adults in particular, are significantly more likely than non-LGBTQ+ adults to self-report having at least one disability.[8] LGBTQ+ people of color often fare worse than their White and non-LGBTQ counterparts on several aspects of their health and related measures of well-being.[9] Likewise, the burden of observed negative health outcomes is not evenly distributed among LGBTQ+ communities, with transgender people in particular often reporting poorer health when compared to their cisgender counterparts,[10] and even when compared to cisgender LGB people.[11]
Research has also long indicated that LGBTQ+ populations face heightened challenges with respect to various determinants of their health—such as their being significantly more likely to be living in poverty than their straight and cisgender counterparts.[12] Such experiences can have continued impacts on their health and well-being well into the life course, as reflected by research on LGBTQ+ older adults reporting facing heightened and even unique challenges while aging when compared to their cisgender, heterosexual counterparts.[13] These negative health outcomes observed among LGBTQ+ populations have been linked to a number of factors, including exposure to minority stress due to experiences with stigma and discrimination.[14]
The Current State of Emergency for LGBTQ+ People Supports the Proposed Data Elements
Certain LGBTQ+ subpopulations report distinct needs tied to their health, like gender dysphoria—which is a health condition that disproportionately affects transgender people and is often treated via the provision of gender-affirming care.[15] Not all transgender and other gender-diverse people desiring the broad range of medical and non-medical interventions that comprise gender-affirming care seek it out for a variety of reasons.These often and increasingly include the risk of being denied services and other forms of discrimination that evidence shows can even come at the hands of medical providers.[16] Indeed, research indicates that encountering discrimination while in pursuit of health care has long been an acute fear for and lived experience of transgender and other LGBTQ+ people.[17]
Discrimination against LGBTQ+ communities can take many forms and become insidiously commonplace for those holding multiple marginalized identities experiencing the combined brunt of ableism, racism, colorism, misogyny, and other forms of hate.And unfortunately, such hatred against LGBTQ+ people is currently on the rise. Recently, and for the first time in our nearly half-century history, HRC declared a national state of emergency for LGBTQ+ people in the U.S., following an unprecedented spike in anti-LGBTQ+ legislative assaults, political extremism, and violent attacks nationwide.[18] In many parts of the country, LGBTQ+ people are facing efforts to roll back safeguards against discrimination and harassment alongside bills and administrative actions that would ban their access to critical services like gender-affirming care.
LGBTQ+ people are being increasingly forced to seek services from new and alternative providers due to these bans, and some have even had to move their care to providers in different, less restrictive states. As this becomes a reality for more LGBTQ+ people, it is imperative that their various providers be able to exchange data that will ensure continuity of care and help facilitate improvement of services for these and other marginalized populations. We believe that the data elements proposed as part of the Draft USCDI v5 would allow for same and therefore support ONC finalizing this proposal as soon as possible.
The Proposed Data Elements Would Empower Efforts to Increase Equity for LGBTQ+ Patients
Additionally, we believe that the Draft USCDI v5 data elements would have practical utility by empowering the government and providers’ efforts to advance equity for LGBTQI+ people.Information like a patient’s sexual orientation, gender identity, sex assigned at birth, name used, and pronouns are necessary for providers to be able to truly provide culturally affirming and responsive health care to their patients. We commend the Biden Administration for consistently recognizing this, and for those values being operationalized through ONC’s proposed Draft UCSDI v5.
In June 2022, President Biden issued Executive Order 14075, which requires the creation of an evidence agenda to coordinate a cross-government effort to promote and engage in inclusive and responsible data collection practices on sexual orientation, gender identity, and variations in sex characteristics.[19] In January 2023, the Subcommittee on Sexual Orientation, Gender Identity, and Variations in Sex Characteristics Subcommittee on Equitable Data of the National Science and Technology Council published that Federal Evidence Agenda on LGBTQI+ Equity, which serves as a roadmap to drive federal agencies working to build evidence and leverage data to advance equity for LGBTQI+ people.[20] As summarized in that agenda, the executive order “recognizes that in order to advance equity for LGBTQI+ people, the Federal Government must continue to gather the evidence needed to understand the LGBTQI+ community, the barriers they face, and the policy changes the Federal Government can make to enable their health and well-being.”[21]
As part of these efforts to improve equity, we commend ONC for its inclusion of brand-new data elements on patients’ Pronouns and Name to Use within the Draft USCDI v5.One barrier to continued access to care faced by LGBTQ+ and non-LGBTQ+ people alike is not feeling safe and affirmed by one’s provider, specifically the risk of being referred to in an improper or disrespectful way. Individuals may wish to be referred to using names beyond their legal names for a variety of reasons and deserve to have that wish respected no matter the reason. This is particularly the case for LGBTQ+ patients facing an increasingly intolerant landscape across the country that can often find solace through providers willing to affirm their identities and lived experiences using a specific name or pronoun.
Fortunately, if the Draft USCDI v5 were to be finalized, providers will be able to empower one another to refer to even their newest patients just as they wish to be referred to. This would be the case even for those not already practicing inclusivity in this respect and could help drive providers to implement these and related practices. In this spirit, ONC should considerrequiring a banner or pop up of some sort to ensure providers will see this information when opening patient records and therefore minimize the risk of an incorrect name being used to refer to a patient.
The Proposed Data Elements Are Consistent with Best Practices for Data Collection from LGBTQ+ People
Finally, we note that the government has long been collecting information on LGBTQ+ people,[22] with those experiences informing the proposed data elements ONC proposes here. Considering past successes by various federal agencies in this regard, we believe that providers will be able to successfully collect sexual orientation and gender identity-related information from patients themselves following the finalization of the Draft USCDI v5.
For decades, government and other researchers have researched concepts like sexual orientation and gender identity (SOGI), and found that it is more than possible to measure them and obtain quality data; and likewise that respondents do not find this information to be so sensitive that they would not provide it.[23] In a recent report on the collection of SOGI information in the survey context, the Office of Management and Budget (OMB) highlighted guiding principles that have emerged out of that work to support the ongoing collection of SOGI information, including that collected data should have utility, be in support of an agency’s mission, and be done with emphasis on protecting respondents’ confidentiality.[24] Recent recommendations issued by a panel formed by the National Academies of Sciences, Engineering, and Medicine on SOGI measurement in federal surveys and other instruments (the “NASEM Panel”) include well-tested measures for both sexual orientation and gender identity and echo OMB’s recommendations.[25]
Among other recommendations, the NASEM Panel recommends that agencies shift away from collecting information on sex unless information on that construct as a biological variable is necessary.[26] When that type of collection is in fact necessary, the NASEM Panel recommends that such collection “be accompanied by collection of data on gender,”[27] echoing OMB’s recommendation that “respondents should not be asked to provide their sex assigned at birth unless they are also given the opportunity to provide their current gender identity.”[28]We therefore commend the Draft USCDI v5 for being consistent with these recommendations, specifically through its inclusion of a new data element on Sex Parameter for Clinical Use alongside maintained data elements on Sexual Orientation and Gender Identity.
Resources like the Human Rights Campaign Foundation’sannual Healthcare Equality Indexhave been developed toprovide information on and encourage facilities to adopt equitable, knowledgeable, sensitive, and welcoming health care practices free from stigma and discrimination for LGBTQ+ people.[29] This includes resources on the collection of SOGI information that we believe will help providers implement the requirements of the Draft USCDI v5 if they are to be finalized. Indeed, our analysis has found that approximately 90% of participants in our most recent index are already collecting these data, including patients’ sexual orientation, gender identity, name to use, and pronouns.
Finally, however, we note that included among the NASEM Panel’s recommendations is a call for more research on intersex people, or individuals with innate variations in their physical sex characteristics, which are not reflected within the Draft USCDI v5. Intersex people are estimated to make up as many as 1.7% of the global population.[30] Intersex and LGBTQ+ people share common, underserved health and equity needs, as well as challenges and experiences with social stigma, invisibility, and discrimination, that are rooted in restrictive norms and stereotypes regarding gender and sexual orientation. Intersex people also considerably overlap with other LGBTQI+ populations, though they are distinct.[31] For example, intersex populations are distinct from transgender and non-binary populations, but overall are more likely to be transgender or non-binary. Because of these overlapping challenges, we recommend that ONC continue working to ensure providers can be empowered to collect data on the intersex status of their patients alongside their sexual orientation and gender identity.
Thank you for this opportunity to submit comments in support of the health and well-being of LGBTQ+ people.
[1] Human Rights Campaign Found., We Are Here: Understanding The Size of the LGBTQ+ Community (2021),https://hrc-prod-requests.s3-us-west-2.amazonaws.com/We-Are-Here-120821.pdf.
[2] Shoshana K. Goldberg et al., Human Rights Campaign & Bowling Green State Univ., Equality Electorate: The Projected Growth of the LGBTQ+ Voting Bloc in Coming Years (2022),https://hrc-prod-requests.s3-us-west-2.amazonaws.com/LGBTQ-VEP-Oct-2022.pdf. The Williams Institute has previously estimated that at least 2 million youth ages 13–17 identify as LGBT in the U.S., including approximately 300,000 youth who are transgender. See generally id.; Kerith J. Conron, Williams Inst., LGBT Youth Population in the United States (2020),https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Youth-US-Pop-Sep-2020.pdf.
[3] Soon Kyu Choi & Ilan H. Meyer, Williams Inst., LGBT Aging: A Review Of Research Findings, Needs, And Policy Implications 2 (2016), https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Aging-Aug-2016.pdf.
[4] LGBT Demographic Data Interactive, Williams Inst. (January 2019), https://williamsinstitute.law.ucla.edu/visualization/lgbt-stats/?topic=LGBT#demographic.
[5]Id.
[6] Jody L. Herman et al., Williams Inst., How Many Adults and Youth Identify as Transgender in the United States? 6 (2022), https://williamsinstitute.law.ucla.edu/wp-content/uploads/Trans-Pop-Update-Jun-2022.pdf;
[7] See, e.g., Kellan E. Baker, Findings From the Behavioral Risk Factor Surveillance System on Health-Related Quality of Life Among US Transgender Adults, 2014-2017, 179 JAMA Internal Medicine 1141 (2019), https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2730765; Gilbert Gonzales & Carrie Henning-Smith, Health Disparities by Sexual Orientation: Results and Implications from the Behavioral Risk Factor Surveillance System, 42 J. Community Health 1163 (2017), https://pubmed.ncbi.nlm.nih.gov/28466199/.
[8] Human Rights Campaign Found., Understanding Disability in the LGBTQ+ Community, Human Rights Campaign (Aug. 12, 2022), https://www.hrc.org/resources/understanding-disabled-lgbtq-people.
[9] See, e.g., Lauren J.A. Bouton et al., Williams Inst., LGBT Adults Aged 50 and Older in the US During the COVID-19 Pandemic (2023), https://williamsinstitute.law.ucla.edu/publications/older-lgbt-adults-us/; Bianca D.M. Wilson et al., Williams Inst., Racial Differences Among LGBT Adults in the U.S.: LGBT Well-Being at the Intersection of Race (2022), https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Race-Comparison-Jan-2022.pdf.
[10] See, e.g., Jody L. Herman & Kathryn K. O'Neill, Williams Inst., Well-Being Among Transgender People During the COVID-19 Pandemic (2022), https://williamsinstitute.law.ucla.edu/wp-content/uploads/Trans-Pulse-Toplines-Nov-2022.pdf.
[11]See generallyIlan H. Meyer et al., Williams Inst., LGBTQ People in the US: Select Findings from the Generations and TransPop Studies (2021), https://williamsinstitute.law.ucla.edu/wp-content/uploads/Generations-TransPop-Toplines-Jun-2021.pdf (results of a nationally-representative sample of LGBTQ people).
[12] M. V. Lee Badgett et al., Williams Inst., LGBT Poverty In The United States: A Study Of Differences Between Sexual Orientation and Gender Identity Groups (2019), https://williamsinstitute.law.ucla.edu/wp-content/uploads/National-LGBT-Poverty-Oct-2019.pdf; see also Bianca D.M. Wilson et al., Williams Inst., LGBT Poverty in the United States (2023),https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Poverty-COVID-Feb-2023.pdf (using data from the Behavioral Risk Factor Surveillance System and the Census Bureau’s Household Pulse Survey to analyze poverty rates during the early days of the COVID-19 pandemic).
[13] See, e.g., Choi & Meyer, supranote3, at 8 (finding that when compared to their cisgender counterparts, transgender older adults “may seek more frequent and intimate health care due to age related physical conditions and disabilities”).
[14] SeeInstitute of Medicine, The Health Of Lesbian, Gay, Bisexual, And Transgender People: Building A Foundation For Better Understanding 20–21 (2011), https://www.ncbi.nlm.nih.gov/books/NBK64806; see alsoLogan S. Casey et al., Discrimination in the United States: Experiences of Lesbian, Gay, Bisexual, Transgender, and Queer Americans, 54 Health Servs. Research 1454 (2019), https://pubmed.ncbi.nlm.nih.gov/31659745/.
[15] Kate Cooper et al., The Phenomenology of Gender Dysphoria In Adults: A Systematic Review and Meta-Synthesis, 80 Clinical Psychology Rev. 101875 (2020), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7441311/.
[16] See, e.g., Lauren S.H. Chong et al., Experiences and Perspectives of Transgender Youths in Accessing Health Care: A Systematic Review, 175 JAMA Pediatrics 1159 (2021), https://jamanetwork.com/journals/jamapediatrics/article-abstract/2782148.
[17] See, e.g., You Don’t Want Second Best” Anti-LGBT Discrimination in US Health Care, Human Rights Watch (July 23, 2018), https://www.hrw.org/report/2018/07/23/you-dont-want-second-best/anti-lgbt-discrimination-us-health-care.
[18] Human Rights Campaign, LGBTQ+ Americans Under Attack: A Report and Reflection On The 2023 State Legislative Session (2023), https://hrc-prod-requests.s3-us-west-2.amazonaws.com/Anti-LGBTQ-Legislation-Impact-Report.pdf.
[19]Exec. Order. 14075, Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals, 87 Fed. Reg. 37,189 (June 15, 2022).
[20] Nat’l Science & Technology Council, Federal Evidence Agenda on LGBTQI+ Equity (2023), https://www.whitehouse.gov/wp-content/uploads/2023/01/Federal-Evidence-Agenda-on-LGBTQI-Equity.pdf.
[21] Id.at 3.
[22] See generallyNat’l Academies Of Sciences, Engineering, & Med., Measuring Sex, Gender Identity, And Sexual Orientation (2022), https://nap.nationalacademies.org/catalog/26424/measuring-sex-gender-identity-and-sexualorientation.
[23] Id.at 52–55, 67.
[24] OMB, Recommendations on the Best Practices for the Collection of Sexual Orientation and Gender Identity Data on Federal Statistical Surveys 3 (2023), https://www.whitehouse.gov/wp-content/uploads/2023/01/SOGI-Best-Practices.pdf.
[25] Nat’l Academies Of Sciences, Engineering, & Med.,supra note22.
[26] Id.at 8.
[27] Id.
[28] OMB, supra note24, at 4.
[29]HUMAN RIGHTS CAMPAIGN FOUND., HEALTHCARE EQUALITY INDEX 2022 (2022)https://reports.hrc.org/hei-2022.
[30] Melanie Blackless et al., How Sexually Dimorphic Are We? Review And Synthesis, 12 Am. J. Human Biology 151 (2000).
[31] Nat’l Academies Of Sciences, Engineering, & Med, Understanding the Well-Being of LGBTQI+ Populations26–28 (2020),https://doi.org/10.17226/25877.
