Who Are We Missing? Reporting of Transgender and Gender Expansive Populations in Clinical Trials

Rice, Eli; Lan, Roy; Nunes, Julio C.; Shah, Rushil; Echols, Melvin R.; Lunn, Mitchell; Bryant, Lin; Lewis, Eldrin F.; Awad, Christopher; Idris, Muhammed Y.; Clark, Kira; Periyakoil, Vyjeyanthi S.; Cruz, Erin Rose; Chen, Jonathan; Brown‐Johnson, Cati; Palaniappan, Latha; Wang, Paul J.

doi:10.1016/s0735-1097(23)00563-6

Cited by 1 publication

(3 citation statements)

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“…SOGIE data have been conspicuously absent in clinical research. Clinical observational studies and trials have rarely reported SOGIE data as a part of the baseline characteristics of the patients . A search of the National Heart, Lung, and Blood Institute’s Biological Specimen and Data Repository Information Coordinating Center revealed that 0 of 229 studies collected SOGIE data…”

Section: Current State Of Sogie Data Capturementioning

confidence: 99%

“…Similarly, a survey conducted in 2016 showed that about 6% of European adults identified as LGBTQ+, with variability from 1.6% to 7.1% . Despite the increasing population of self-identified LGBTQ+ people, sexual orientation and gender identity and expression (SOGIE) data have not been historically captured in most public databases, registries, electronic health records (EHRs), and cardiovascular clinical trials . This is important because the underrepresentation of minoritized populations in clinical research, most importantly cardiovascular trials that dictate medical practice, has been partly responsible for worse cardiovascular outcomes in these populations.…”

Section: Introductionmentioning

confidence: 99%

“…3,4 Despite the increasing population of self-identified LGBTQ+ people, sexual orientation and gender identity and expression (SOGIE) data have not been historically captured in most public databases, registries, electronic health records (EHRs), and cardiovascular clinical trials. 5 This is important because the underrepresentation of minoritized populations in clinical research, most importantly cardiovascular trials that dictate medical practice, has been partly responsible for worse cardiovascular outcomes in these populations. This underrepresentation has been recognized in racial, ethnic, and biological sex minority individuals (ie, females), which is often incorrectly referred to as gender in clinical research, further demonstrating the importance of accurate SOGIE data collection.…”

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Emphasizing Sexual Orientation and Gender Identity Data Capture for Improved Cardiovascular Care of the LGBTQ+ Population

Deb,

Porter,

van Cleeff

et al. 2024

JAMA Cardiol

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ImportanceThe rising self-identifying lesbian, gay, bisexual, transgender, and queer (LGBTQ+) population makes understanding the unique health care needs of sexual and gender minoritized patients an urgent one. The interaction between minority stress and cardiovascular disease has been well described among underrepresented minoritized populations. The underrepresentation of minoritized populations in clinical research is partly responsible for worse cardiovascular outcomes in these populations. The absence of sexual orientation and gender identity and expression (SOGIE) data makes it difficult to understand the cardiovascular health of LGBTQ+ adults, thereby widening health care disparities in this population. Advancing cardiovascular health equity for LGBTQ+ patients must begin with careful and accurate SOGIE data collection.ObservationsCurrent SOGIE data capture remains inadequate despite federal mandates. Challenges in data collection include political and regulatory discrimination, patient/practitioner hesitancy, lack of supportive guidance on SOGIE data collection, improper terminology, regulatory inertia, and inadequate and often incorrect integration of SOGIE data into electronic health records (EHRs). Additional challenges include grouping participants as “others” for statistical significance. The inclusion of SOGIE data has demonstrated an impact in other fields like cancer survivorship and surgery. The same needs to be done for cardiology.Conclusions and RelevancePotential solutions for improving much-needed SOGIE data collection include (1) implementing LGBTQ+ inclusive policies, (2) integrating SOGIE data into the EHR, (3) educating health care professionals on the relevance of SOGIE to patient-centered care, and (4) creating a diverse cardiovascular workforce. These steps can substantially enhance the ability to collect SOGIE data to address LGBTQ+ cardiovascular health care disparities.

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Section: Current State Of Sogie Data Capturementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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