The Feasibility of Using Electronic Health Data for Research on Small Populations. Factors affecting the health care of and research on the LGBT population


Stigma—the “inferior status, negative regard, and relative powerless that society collectively assigns to individuals and groups that are associated with various conditions, statuses, and attributes” —was identified by the IOM as a major factor that affects access to or use of medical care by LGBT people.[90] Unfortunately, stigma and its effects also complicate research into the health and health care needs of this population.

Stigma may take the form of negative behavior―epithets, shunning, discrimination, and violence—toward the stigmatized group. Health providers themselves may hold negative beliefs and attitudes that create discomfort for LGBT people in health care situations.91 Notably, some of the conditions for which this population may be at higher risk—for example, psychological and substance abuse problems—also involve an element of stigmatization.

Stigma and its effects are central to many questions regarding the health and health care of the LGBT population, but they also make good research into those very questions more difficult. Experience with and anticipation of stigma-related attitudes and behavior may affect the willingness of people from the LGBT population to self-identify in survey research.92

The effects of stigma may also make people reluctant to seek needed care and to withhold important information when they do so. The content of medical records may also be affected by health professionals’ lack of knowledge about some health care needs of LGBT patients, or other subgroups that are unfamiliar to the provider.93 As the IOM report noted, health professionals do not necessarily know what questions to ask about a patient’s sexual history or be comfortable in doing so. Provider biases or lack of education may affect the questions they ask or the information they document.

Data about LGBT status may be affected by the fact that sexual behavior and gender identity can change over time,94 adding a dimension to longitudinal research. Repeating questions about sexual behavior and gender identity in longitudinal studies, as well as date stamping information in electronic health records, are examples of potential approaches to address this specific issue.95

Care-seeking behavior is also affected by not having health insurance, and the IOM report cites several studies showing that LGBT people and their children are more likely than heterosexuals to lack health insurance.96 A majority of large employers now provide health benefits to the same-sex partners of employers, but this has been much less common among small employers. The implementation of the Affordable Care Act should substantially address the high uninsured rates among LGBT people.

View full report


"rpt_ehealthdata.pdf" (pdf, 1.99Mb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®