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1.
J Biomed Inform ; 154: 104653, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38734158

ABSTRACT

Many approaches in biomedical informatics (BMI) rely on the ability to define, gather, and manipulate biomedical data to support health through a cyclical research-practice lifecycle. Researchers within this field are often fortunate to work closely with healthcare and public health systems to influence data generation and capture and have access to a vast amount of biomedical data. Many informaticists also have the expertise to engage with stakeholders, develop new methods and applications, and influence policy. However, research and policy that explicitly seeks to address the systemic drivers of health would more effectively support health. Intersectionality is a theoretical framework that can facilitate such research. It holds that individual human experiences reflect larger socio-structural level systems of privilege and oppression, and cannot be truly understood if these systems are examined in isolation. Intersectionality explicitly accounts for the interrelated nature of systems of privilege and oppression, providing a lens through which to examine and challenge inequities. In this paper, we propose intersectionality as an intervention into how we conduct BMI research. We begin by discussing intersectionality's history and core principles as they apply to BMI. We then elaborate on the potential for intersectionality to stimulate BMI research. Specifically, we posit that our efforts in BMI to improve health should address intersectionality's five key considerations: (1) systems of privilege and oppression that shape health; (2) the interrelated nature of upstream health drivers; (3) the nuances of health outcomes within groups; (4) the problematic and power-laden nature of categories that we assign to people in research and in society; and (5) research to inform and support social change.


Subject(s)
Medical Informatics , Humans , Medical Informatics/methods , Biomedical Research
2.
Soc Sci Med ; 345: 116713, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38423850

ABSTRACT

While much of the transgender health literature has focused on poor health outcomes, less research has examined how trans people find reliable information on, and actually go about accessing, gender-affirming healthcare. Through qualitative interviews with creators of trans technologies, that is, technologies designed to address problems that trans people face, we found that digital technologies have become important tools for proliferating access to gender-affirming care and related health information. We found that technologists often employed different processes for creating their technologies, but they coalesced around the goal of enabling and increasing access to gender-affirming care. Creators of trans health technologies also encountered precarious conditions for creating and maintaining their technologies, including regional gaps left by national resources focused on the US east and west coasts. Findings demonstrated that trans tech creators were motivated to create and maintain these technologies as a means of caring for one another and forming trans communities in spite of the precarious conditions trans people face living under systemic oppression.


Subject(s)
HIV Infections , Transgender Persons , Humans , Health Services Accessibility , Technology
3.
Transgend Health ; 8(6): 526-533, 2023 Dec.
Article in English | MEDLINE | ID: mdl-38130984

ABSTRACT

Purpose: Multiple consent models exist for initiating gender-affirming hormone therapy (GAHT). Our study aim was to examine the variety of approaches utilized by clinicians. Methods: Online and in-person recruitment of clinicians involved in gender-affirming care was undertaken from June 2019 through March 2020. Participants completed an online survey. Results: Of the 175 respondents, 148 prescribed GAHT. Sixty-one (41.2%) prescribed to adults only, 11 (7.4%) to minors only, and 76 (51.4%) prescribed to adults and minors. Of those who prescribed to adults, more than half (n=74, 54.4%) utilized a written consent model, one-fourth only verbal consent (n=33, 24.3%), and one-fifth required an additional mental health assessment (MHA) (n=29, 21.3%). Of those prescribing to minors, most required either written consent (n=39, 44.8%) or an additional MHA (n=35, 40.2%). Only 11 (12.6%) utilized only verbal consent for minors. Rationales provided for requiring an additional MHA in adults included protection from litigation, lack of competence in assessing psychosocial readiness for GAHT, and believing that this is the best way to ensure the patient has processed the information. Practicing in multidisciplinary clinics was associated with not requiring an MHA for adult GAHT. Conclusion: Clinicians across fields are utilizing different models to provide the same treatment, with varying rationales for the same model. As a result, patients receive nonstandard access to care despite similar clinical presentations. Our study highlights an important area for further improvement in GAHT care.

4.
Spat Spatiotemporal Epidemiol ; 45: 100585, 2023 06.
Article in English | MEDLINE | ID: mdl-37301600

ABSTRACT

While the extant literature has established that transgender people face significant barriers to accessing healthcare, no studies to date have offered an explicitly spatial analysis of their access to trans-specific care. This study aims to fill that gap by providing a spatial analysis of access to gender-affirming hormone therapy (GAHT) using Texas as a case study. We used the three-step floating catchment area method, which relies on census tract-level population data and location data for healthcare facilities to quantify spatial access to healthcare within a specific drive-time window, in our case 120 min. For our tract-level population estimates we adapt estimates of the rates of transgender identification from a recent data source, the Household Pulse Survey, and use these in tandem with a spatial database of GAHT providers of the lead author's creation. We then compare results of the 3SFCA with data on urbanicity and rurality, as well as which areas are deemed medically underserved. Finally, we conduct a hot-spot analysis that identifies specific areas where health services could be planned in ways that could improve both access to GAHT for trans people and access to primary care for the general population. Ultimately, we conclude that our results illustrate that patterns of access to trans-specific medical care, like GAHT, do not neatly follow patterns of access to primary care for the general population and that therefore trans communities' access to healthcare warrants specific, further investigation.


Subject(s)
Transgender Persons , Humans , Health Services Accessibility , Texas/epidemiology , Spatial Analysis , Hormones
5.
Curr HIV/AIDS Rep ; 20(3): 160-169, 2023 06.
Article in English | MEDLINE | ID: mdl-37012537

ABSTRACT

PURPOSE OF REVIEW: Pre-exposure prophylaxis (PrEP) represents one of the most effective methods of prevention for HIV, but remains inequitable, leaving many transgender and nonbinary (trans) individuals unable to benefit from this resource. Deploying community-engaged PrEP implementation strategies for trans populations will be crucial for ending the HIV epidemic. RECENT FINDINGS: While most PrEP studies have progressed in addressing pertinent research questions about gender-affirming care and PrEP at the biomedical and clinical levels, research on how to best implement gender-affirming PrEP systems at the social, community, and structural levels remains outstanding. The science of community-engaged implementation to build gender-affirming PrEP systems must be more fully developed. Most published PrEP studies with trans people report on outcomes rather than processes, leaving out important lessons learned about how to design, integrate, and implement PrEP in tandem with gender-affirming care. The expertise of trans scientists, stakeholders, and trans-led community organizations is essential to building gender-affirming PrEP systems.


Subject(s)
Anti-HIV Agents , Epidemics , HIV Infections , Pre-Exposure Prophylaxis , Transgender Persons , Humans , HIV Infections/epidemiology , HIV Infections/prevention & control , HIV Infections/drug therapy , Gender Identity , Pre-Exposure Prophylaxis/methods , Anti-HIV Agents/therapeutic use
7.
Soc Sci Med ; 303: 115014, 2022 06.
Article in English | MEDLINE | ID: mdl-35594740

ABSTRACT

What little data on transgender healthcare is available often focuses on transgender people's negative experiences in accessing healthcare. However, no research has been conducted that illustrates where gender-affirming hormone therapy, one part of transgender-specific medical care, is available. Without these data, large scale research to discern patterns of availability of and access to gender-affirming medical care is nearly impossible. Community-based organizations, and even trans individuals themselves have constructed repositories and databases of healthcare providers to inform other care seekers where they can access transition-related care providers, but their data are often incomplete, and usually formatted to be user-facing rather than streamlined for research purposes. To fill this gap, this article outlines the methodology for the construction of a spatial database of providers of gender-affirming hormone therapy for transgender people in the US, which is available on GitHub, created from existing community-based resources and the accompanying verification process. The completeness of the database is tested via comparison to data from the US Transgender Survey in which respondents reported travel distance to access transgender-specific care providers. The database accounted for all but 7.5% of respondents who may have accessed unknown facilities based on self-reported travel distance. Results indicate that existing methodologies for database construction regarding healthcare providers are difficult to apply when working with transgender-specific medical care and that tests for replicability and validation often take for granted the wide availability of relevant data and information. While the database unto itself can only demonstrate where care is available, it will enable future research into why these geographic patterns in care availability exist. Finally, the methodology can be replicated to produce databases for other kinds of specialized or politicized medical care such as abortion, gender-affirming surgery, or HIV treatment.


Subject(s)
Transgender Persons , Delivery of Health Care , Female , Gender Identity , Health Personnel , Hormones , Humans , Pregnancy
8.
Soc Psychiatry Psychiatr Epidemiol ; 57(5): 963-971, 2022 May.
Article in English | MEDLINE | ID: mdl-35137246

ABSTRACT

PURPOSE: Transgender people face known barriers to accessing mental health care generally, and gender-affirming care in particular. However, little research has been done to evaluate the impact of systemic racism on access to gender-affirming mental health care (GAMHC) among transgender people of color (TPOC). METHODS: We conducted a cross-sectional, secondary analysis of data on 20,967 respondents to the 2015 United States Transgender Survey who reported a desire for GAMHC services related to their gender transition. We estimated inequities across ethnoracial groups in access to GAMHC, and measured the association between severe psychological distress and access to GAMHC among TPOC. RESULTS: We found decreased access to GAMHC across all TPOC groups. Inequities in access to GAMHC were most severe among assigned male at birth respondents in the Black/African-American group (aOR 0.51, 95% CI 0.37-0.71), Latino/a/e/Hispanic group (aOR 0.52, 95% CI 0.42-0.65), and Native American group (aOR 0.59, 95% CI 0.38-0.94). Among all respondents, severe psychological distress was highest among Native American respondents (47.4%), Latino/a/e/Hispanic (47.1%) respondents, and other/multiracial respondents (46.7%) and lowest among whites (39.9%). Further, among all TPOC, access to GAMHC was associated with decreased odds of severe psychological distress (aOR 0.74, 95% CI 0.62-0.87). CONCLUSION: These results illustrate the need for research that explicitly addresses the intersectional experiences of transgender communities, and the structural drivers of inequities in access to gender-affirming care.


Subject(s)
Psychological Distress , Transgender Persons , Adult , Cross-Sectional Studies , Gender Identity , Humans , Infant, Newborn , Male , Mental Health , Transgender Persons/psychology , United States
9.
J Am Med Inform Assoc ; 29(2): 271-284, 2022 01 12.
Article in English | MEDLINE | ID: mdl-34486655

ABSTRACT

There are over 1 million transgender people living in the United States, and 33% report negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records (EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize both individual patient experiences and the efficacy and reproducibility of EHR population-based studies. We also briefly discuss adequate additions to the EHR considering name and pronoun usage. We add the disclaimer that these questions are more complex than commonly assumed. We conclude that collaborations between local transgender and gender-diverse persons and medical providers as well as open inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm in transgender and gender-diverse health.


Subject(s)
Transgender Persons , Data Collection , Electronic Health Records , Gender Identity , Humans , Reproducibility of Results , United States
10.
Soc Sci Med ; 292: 114610, 2022 01.
Article in English | MEDLINE | ID: mdl-34923191

ABSTRACT

This paper presents results of a research priority setting process focused on trans women living with and affected by HIV across Canada. It features data from semi-structured interviews and focus groups conducted with a diverse group of 76 trans women in five urban centers across the country on how they have navigated health and social service programming within their geographic context. The results focus on the structure and types of services. Respondents offered simple, yet creative ways to address barriers to vital services based on their individual and collective experiences. Notably, participants stressed the need for 1) trans-friendly and trans-specific services, 2) integrated health services, and aid in navigating complex, overlapping systems, and 3) comprehensive community-based services. They also suggest employing trans women as care coordinators or case managers in order to foster more trans-friendly environments and empower community members. We identify concrete ways to improve health and social services at the level of service delivery and program design, as well as recommendations for future participatory research. We close with an interrogation of trans people, and trans women living with and affected by HIV in particular, as 'hard to reach' populations.


Subject(s)
HIV Infections , Transgender Persons , Female , HIV Infections/therapy , Health Services Accessibility , Humans , Qualitative Research , Social Work
11.
Ann Epidemiol ; 65: 65-71, 2022 01.
Article in English | MEDLINE | ID: mdl-34757013

ABSTRACT

Transgender identities and health are highly politicized in the United States leading to restrictions on relevant data collection in national health surveillance systems. This has serious implications on transgender population health research; an urgent area of study given the systemic discrimination faced by transgender individuals and the resultant social and health inequities. In this precarious political climate, obtaining high-quality data for research is challenging and in recent years, two data sources have formed the foundation of transgender health research in the United States, namely the 2015 United States Transgender Study and the Behavioral Risk Factor Surveillance System after the launch of the optional Sexual Orientation and Gender Identity Module in 2014. While useful, there are serious challenges to using these data to study transgender health, specifically related to survey weighting methodologies, ascertainment of gender identity, and study design. In this article, we detail these challenges and discuss the strengths and weaknesses of various methodological approaches that have been implemented as well as clarify several common errors that exist in the literature. We feel that this contribution is necessary to provide accurate interpretation of the evidence that currently informs policy and priority setting for transgender population health and will provide vital insights for future studies with these now ubiquitous sources of data in the field.


Subject(s)
Population Health , Transgender Persons , Transsexualism , Behavioral Risk Factor Surveillance System , Female , Gender Identity , Humans , Male , United States
12.
Article in English | MEDLINE | ID: mdl-36636110

ABSTRACT

Gender-affirming hormones have been shown to improve psychological functioning and quality of life among transgender and nonbinary (trans) people, yet, scant research exists regarding whether and why individuals take more or less hormones than prescribed. Drawing on survey data from 379 trans people who were prescribed hormones, we utilized multivariable logistic regression models to identify factors associated with hormone-dosing behaviors and content analysis to examine the reasons for dose modifications. Overall, 24% of trans individuals took more hormones than prescribed and 57% took less. Taking more hormones than prescribed was significantly associated with having the same provider for primary and gender-affirming care and gender-based discrimination. Income and insurance coverage barriers were significantly associated with taking less hormones than prescribed. Differences by gender identity were also observed. Addressing barriers to hormone access and cost could help to ensure safe hormone-dosing behaviors and the achievement trans people's gender-affirmation goals.

13.
Reprod Health Matters ; 26(52): 1490624, 2018 Dec.
Article in English | MEDLINE | ID: mdl-30070172

ABSTRACT

This roundtable discussion is the result of a research symposium entitled In Transition: Gender [Identity], Law & Global Health where participants took up the challenge to engage with the question: What will it take to ensure the sexual and reproductive health and rights (SRHR) of transgender populations across the globe? The barriers to overcome are fierce, and include not only lack of access to health services and insurance but also stigma and discrimination, harassment, violence, and violations of rights at every turn. Transgender people must of course lead any sort of initiatives to improve their lives, even as partnerships are needed to build capacity, translate lived experience into usable data, and to make strategic decisions. The SRHR of transgender people can only be addressed with attention to the social, cultural, legal, historical, and political contexts in which people are situated, with social, psychological, medical, and legal gender affirmation as a key priority shaping any intervention. Bringing together nine diverse yet complementary perspectives, our intent is to jumpstart a global and multigenerational conversation among transgender activists, lawyers, policy-makers, programmers, epidemiologists, economists, social workers, clinicians and all other stakeholders to help think through priority areas of focus that will support the needs, rights, and health of transgender populations. Making the changes envisioned here is possible but it will require not only the advocacy, policy, programmatic and research directions presented here but also struggle and action locally, nationally, and globally.


Subject(s)
Global Health , Reproductive Health/standards , Reproductive Rights/standards , Transgender Persons , Attitude of Health Personnel , Developing Countries , Health Education/organization & administration , Health Services Accessibility/standards , Humans , Prejudice , Research/organization & administration , Social Stigma , Social Work/organization & administration
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