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

Abstract

Guidelines and recommendations to properly elicit and document sexual orientation and gender identity in the clinical setting are rapidly emerging; however, in the epidemiologic research setting, information about collection, analysis, presentation, and dissemination of LGBTQI data is nascent. Federal agencies have worked to optimize epidemiologic research data collection from LGBTQI people. Despite these efforts, research data collection guidelines are inconsistent, and the data remain inadequate. The consequence of neglecting to collect data accurately from LGBTQI people is epidemiologic datasets that distort health professionals' and policymakers' perception of who comprises our communities and what the disease burden truly is. Additional harm is accrued by members of the neglected groups, including medical students and trainees, who may feel invisible, disrespected, and unsafe when presented with discriminatory data. With this article, we use our perspectives as a medical educator and a medical student to describe the challenge of working with inadequate LGBTQI datasets. We recommend five actions that can be taken by individuals, departments, and institutions to mitigate harm from the existing datasets: 1) acknowledge the limitations of the data; 2) develop, disseminate, and encourage use of an inclusive lexicon; 3) include LGBTQI-related criteria on peer teaching reviews; 4) engage students and trainees as partners, and if appropriate, content experts to review curriculum; and 5) self-identify as an agent of social change. In addition, we discuss systems-level considerations for realizing the goal of having comprehensive, accurate, and inclusive national data to drive health care delivery and health policy decisions. These include expanding research guidelines to address reporting and dissemination best practices for LGBTQI data, and widespread adoption of data reporting guidelines by biomedical journals. There is an urgent need for data to support quality care of LGBTQI communities. The health of our family, friends, neighbors, and nation depends on inclusive, accurate data.