Capturing patients, missing inequities: Data standardization on sexual orientation and gender identity across unequal clinical contexts.

In effort to address fundamental causes and reduce health disparities, public programs increasingly mandate sites of care to capture patient data on social and behavioral domains within Electronic Health Records (EHRs). Data reporting drawing from EHRs plays an essential role in public management of social problems, and data on social factors are commonly cited as foundational for eliminating health inequities. Yet one major shortcoming of these data-centered initiatives is their limited attention to social context, including the institutional conditions of biomedical stratification and variation of care provision across clinical settings. In this article, we leverage comparative fieldwork to examine provider and system responses to mandated data collection on patient sexual orientation and gender identity (SOGI), highlighting unequal clinical contexts as they appear across a large county safety-net institution and an LGBTQ-oriented health organization. Although point of care data collection is commonly justified for governance in the aggregate (e.g., disparity monitoring), we find standardized data on social domains presents a double-edged sword in clinical settings: formal categories promote visibility where certain issues remain hidden, yet constrain clinical utility in sites with greater knowledge and experience with related topics. We further illustrate how data standardization captures patient identities yet fundamentally misses these unequal contexts, resulting in limited attenuation of inequity despite broad expectations of clinical change. By revealing the often-invisible contexts of care that elude standard measurement, our findings underline the strengths of qualitative social science in accounting for the complex dynamics of enduring social problems. We call for deeper engagement with the unequal contexts of biomedical stratification, especially in light of increasing pressure to quantify the social amidst the rising tide of data-driven care.

Health Equity Beyond Data: Health Care Worker Perceptions of Race, Ethnicity, and Language Data Collection in Electronic Health Records.

BACKGROUND: Recent research and policy initiatives propose addressing the social determinants of health within clinical settings. One such strategy is the expansion of routine data collection on patient Race, Ethnicity, and Language (REAL) within electronic health records (EHRs). Although previous research has examined the general views of providers and patients on REAL data, few studies consider health care workers' perceptions of this data collection directly at the point of care, including how workers understand REAL data in relation to health equity. OBJECTIVE: This qualitative study examines a large integrated delivery system's implementation of REAL data collection, focusing on health care workers' understanding of REAL and its impact on data's integration within EHRs. RESULTS: Providers, staff, and administrators expressed apprehension over REAL data collection due to the following: (1) disagreement over data's significance, including the expected purpose of collecting REAL items; (2) perceived barriers to data retrieval, such as the lack of standardization across providers and national tensions over race and immigration; and (3) uncertainty regarding data's use (clinical decision making vs. system research) and dissemination (with whom the data may be shared; eg, public agencies, other providers, and insurers). CONCLUSION: Emerging racial disparities associated with COVID-19 highlight the high stakes of REAL data collection. However, numerous barriers to health equity remain. Health care workers need greater institutional support for REAL data and related EHR initiatives. Despite data collection's central importance to policy objectives of disparity reduction, data mandates alone may be insufficient for achieving health equity.

The making of a population: Challenges, implications, and consequences of the quantification of social difference.

How do we make a difference? This paper traces the connections made between quantified knowledge, population health, and social justice by examining the efforts of population scientists to assess sexuality as a point of difference within population-based data systems, including on national health and social surveys, electronic medical records, and the Census. Population scientists emphasize the importance of measuring social difference in order to identify and remedy structural disadvantage. This evaluation requires the assessment of difference and the comparison of distinct groups across standardized outcome measures. In quantifying social difference, however, population scientists obscure or minimize several difficulties in creating comparable populations. I explore some of these challenges by highlighting three central tensions: the separation of difference from other aspects and categories of social experience, the reduction of difference through the use of one over several possible measures, and the enactment of difference as quantified knowledge loops back into society. As a theoretical inquiry into the form of social difference as it is conceptualized, operationalized, and materialized across the science-society nexus, this paper identifies the various commitments made during processes of scientific evaluation. By attending to the values and priorities that exist within and through practices of quantification, I aim to address the problem of measuring social difference as it pertains to the issues of social justice and health equity.

A Tale of Two Cities: Access to Care and Services Among African-American Transgender Women in Oakland and San Francisco.

PURPOSE: The San Francisco Bay Area attracts people from all over the country due to the perception of lesbian, gay, bisexual, and transgender (LGBT) acceptance and affirmation. African-American transgender women are severely marginalized across society and as such have many unmet health and social service needs. This study sought to quantitatively assess unmet needs among African-American transgender women with a history of sex work by comparing residents of Oakland versus San Francisco. METHODS: A total of 235 African-American transgender women were recruited from San Francisco (n=112) and Oakland (n=123) through community outreach and in collaboration with AIDS service organizations. Participants were surveyed regarding basic, health, and social needs and HIV risk behaviors. Pearson Chi-squared tests and a linear regression model examined associations between city of residence and unmet needs. RESULTS: While participants from both cities reported unmet needs, Oakland participants had a greater number of unmet needs in receiving basic assistance, mental health treatment, and health care services. Oakland participants also reported less transgender community identification but higher social support from the family. CONCLUSION: These findings demonstrate the enormity of African-American transgender women's needs within the Bay Area. Greater resources are needed for social service provision targeting this marginalized group of people, particularly in Oakland.

Assessing access to care for transgender and gender nonconforming people: a consideration of diversity in combating discrimination.

Transgender and gender nonconforming people face stigma and discrimination from a wide variety of sources and through numerous social realms. Stigma and discrimination originating from biomedicine and health care provision may impact this group's access to primary care. Such stigma and discrimination may originate not only from direct events and past negative experiences, but also through medicine's role in providing treatments of transitioning, the development of formal diagnoses to provide access to such treatments, and the medical language used to describe this diverse group. This paper examines the postponement of primary curative care among this marginalized group of people by drawing from the National Transgender Discrimination Survey, one of the largest available datasets for this underserved group. This paper also proposes an innovate categorization system to account for differences in self-conceptualization and identity, which has been of considerable concern for transgender and gender nonconforming communities but remains underexplored in social and health research. Results suggest that experience, identity, state of transition, and disclosure of transgender or gender nonconforming status are associated with postponement due to discrimination. Other findings suggest that postponement associated with primary place of seeking care and health insurance has ties to both discrimination and affordability. These findings highlight the importance of combating stigma and discrimination generated from within or experienced at sites of biomedicine or health care provision in improving access to care for this group of people. Improving access to care for all gender variant people requires a critical evaluation of existing research practices and health care provision to ensure that care is tailored as needed to each person's perspective in relation to larger social processes.