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Data, Discrimination, and Harm: LGBTQI People Left Behind.

Anna-Leila Williams1, Rose Lassalle-Klein2

  • 1Department of Medical Sciences, Frank H. Netter MD School of Medicine at Quinnipiac University, Hamden, Connecticut, USA.

Teaching and Learning in Medicine
|August 21, 2024
PubMed
Summary

Inadequate collection of sexual orientation and gender identity data in research distorts health perceptions and harms LGBTQI individuals. Improving data collection and inclusivity is crucial for equitable health care and policy.

Keywords:
Research guidelinesdiscriminationgender identitysexual orientation

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Area of Science:

  • Public Health
  • Epidemiology
  • Health Disparities

Background:

  • Clinical settings have emerging guidelines for sexual orientation and gender identity (SO/GI) data.
  • Epidemiologic research lacks consistent guidelines for collecting, analyzing, and disseminating LGBTQI data.
  • Current LGBTQI datasets are inadequate, distorting perceptions of community health needs and disease burden.

Purpose of the Study:

  • To highlight the challenges posed by inadequate LGBTQI datasets in epidemiologic research.
  • To propose actionable steps for individuals, departments, and institutions to mitigate harm from existing data.
  • To advocate for comprehensive, accurate, and inclusive national data for health care and policy.

Main Methods:

  • Qualitative analysis of challenges from the perspectives of a medical educator and student.
  • Review of existing literature and federal agency efforts on LGBTQI data collection.
  • Formulation of recommendations for improving data quality and inclusivity.

Main Results:

  • Inadequate LGBTQI data collection leads to a distorted understanding of health burdens and can cause harm to LGBTQI individuals and trainees.
  • Five key actions are recommended: acknowledge data limitations, use inclusive language, incorporate SO/GI into reviews, partner with trainees, and promote social change agents.
  • Systems-level changes are needed, including expanded research guidelines and adoption of reporting standards by journals.

Conclusions:

  • Urgent need for inclusive and accurate data to support quality care for LGBTQI communities.
  • Improved data collection and dissemination are essential for health equity and informed policy decisions.
  • Addressing data gaps is critical for the health of the entire nation.