Makadon then discussed some of the new opportunities that exist for gathering patient information on sexual orientation and gender identity that take advantage of patient portals that many health care systems have now installed (Figure 2-1). These portals are designed to enable patients to input information about themselves in the privacy of their homes, which could be particularly important for LGBT people. Another approach that some health care systems are testing is to use iPads handed out at the registration desk to enable patients’ to enter data in private, rather than as verbal answers to what can be embarrassing or awkward questions. That information can then become part of the electronic record that all of an individual’s clinicians would have access to without the need to question the patient.

In closing, Makadon said that there are a few issues that need to be considered in preparation for collecting LGBT data in clinical settings. Clinicians, he said, need to learn about LGBT health issues and the range of expression related to identity, behavior, and desire. Health care system staff members also need to understand these concepts given that patients often report that uncomfortable questions come up at the reception desk, not in the exam room. Patients, too, need to learn about why it is important to communicate this information and to feel comfortable that it will be used appropriately. Finally, collecting data on sexual orientation and gender identity is critical and has to be done sensitively, without assumptions, and for every patient along with all other demographic data. “Our task is to improve quality and access to care for all, including LGBT people, and that starts with more data collection,” said Makadon.


In 2009, Lambda Legal, together with more than 100 partner organizations, surveyed 4,916 people representing a diverse sampling of LGBT communities and people living with HIV, regardless of sexual orientation, gender identity, HIV status, race, ethnicity, age, and geography. The resulting report, When Health Care Isn’t Caring: Lambda Legal’s Survey on Discrimination Against LGBT People and People Living with HIV, was the first to document refusal of care and barriers to health care among LGBT and HIV communities on a national scale, said Beverly Tillery. She added that the findings were surprisingly high in terms of discrimination and substandard care. For example, 56 percent of lesbian, gay, or bisexual individuals and 70 percent of transgender

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