Electronic Health Records

Policy & Regulation News

EHR data collection helps reduce LGBT health disparities

By Jennifer Bresnick

- According to a new report released by the Institute of Medicine (IOM), the voluntary collection of sexual orientation and gender identity data for inclusion in electronic health records may be the first step towards reducing or eliminating certain obstacles that LGBT patients face when accessing healthcare, including access to preventative and reproductive health services, HIV testing, and mental healthcare.

The IOM held a one-day discussion workshop in October of 2012 on the methods and usefulness of collecting such personal data, and concluded that in order to reduce discrimination and provide a detailed look at the LGBT health landscape, providers must be trained to discuss issues of sexual preference and gender identity in order to build stronger, non-judgmental relationships with patients who may lack access to care – or might simply be too embarrassed or fearful to engage with a physician on a regular basis.

It’s a common joke among attendees of women’s colleges that it’s easy to stun campus nurses who ask about condom use and pregnancy prevention by answering “I use lesbianism as my birth control”.  But the reality is that the answer does confuse and shock healthcare providers all too often, and their reactions range from dismissive, to flustered, to actively offensive.  An IOM study from 2011 backs up the anecdotal evidence that lesbian and bisexual women access preventative health services less frequently than their heterosexual peers due to factors like these uncomfortable exchanges.

Access to care – and to the right care – is where the biggest concern lies.  Nine percent of lesbian, gay, or bisexual people and almost 52% of transgender people feared they would be refused medical service.  More than 28% of lesbian, gay, or bisexual people and 73% of transgender people expressed concern that medical personnel would treat them differently than non-LGBT people. Forty-nine percent of lesbian, gay, or bisexual people and almost 90% of transgender people said there were not enough health professionals who were adequately trained to care for them because of their sexual orientation or gender identity status.  It is critical to address these numbers and ensure that concern over one aspect of a patient’s life does not deter them from seeking care for the maintenance of good health.

Harvey Makadon, Director of the National LGBT Health Education Center and a Professor of Medicine at Harvard Medical School, noted that in 2009, the CDC stated that 61% of new HIV cases were among men who had sex with men, although nearly 10% of men who had homosexual encounters identified as heterosexual.  The number of new HIV cases among that population has remained constant and likely reflects the fact that HIV education is not reaching men who have sex with men but do not identify as gay when asked.  This is particularly true among young black men between the ages of 13 and 29, who have seen a nearly 50% increase of HIV cases between 2006 and 2009.

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“These data highlight the fact that LGBT people are not one homogeneous group, but rather that they reflect the same cultural diversity seen throughout the general population,” says Makadon, and that argues for the collection of detailed, accurate data that goes beyond the traditional broad generalizations of “gay”, “straight”, and “bisexual”.  Makadon suggests taking advantage of patient portals to collect information, which are designed to allow patients to input data in the privacy of their own home without having to face a physician or nurse in an exam room while talking about their intimate details.  During the IOM workshop discussion, Jesse Ehrenfeld, from Vanderbilt University, noted that a prospective clinical trial that he and his colleagues recently finished showed that patients are more honest about their personal information when they provided it at home.

Speakers representing federal health agencies noted that updated questions involving sexual orientation will be included in the core of the National Health Information Survey in January of 2013.  Robert Tagalicod of CMS stated that advanced data collection initiatives funded under the HITECH Act of 2009 are being developed, involving CMS’s Office of Minority Health and focusing on the collection of LGBT data, even though the final Stage 2 rule of Meaningful Use did not include such collection.  The Health Resources and Services Administration (HRSA) has made the LGBT community a “service population of focus”, and is also working to amass more detailed statistics on healthcare access.  These efforts include working with transgendered patients to develop educational resources for physicians, in order to enable them to ask better questions surrounding gender identity and sexual health.

HRSA noted that community health centers have a high rate of EHR adoption, and many collect detailed demographic data as they serve the LGBT population, including those who are low-income, homeless, or people of color who may have homosexual encounters while identifying as straight.  The Department of Human Services is using this data to develop strategies to collect the data voluntarily, secure it properly to ensure privacy, and use the resulting information to educate providers on how to best interact with the LGBT community with sensitivity, acceptance, and the highest quality of patient care.

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