Including LGBT Data in Electronic Health Records

Members of the LGBT community experience worse average health outcomes than heterosexuals. The University of California Davis Health System is developing new avenues to address and track these disparities.

A previous study by the Kaiser Family Foundation reports that LGBT people have more asthma diagnoses, headaches, allergies, osteoarthritis, and gastro-intestinal problems than heterosexuals.

Higher rates of HIV/AIDS disproportionately affect the LGBT community. In 2010, gay and bisexual men represented 56 percent of all people with HIV, while only making up two percent of the overall population. Similarly, it has been reported that one in four transgender women is HIV positive. Furthermore, rejection and bullying of LGBT people from an early age can lead to psychological issues that damage long-term physical and emotional health. However, the underlying reasons that the LGBT community experiences health disparities are not well understood. This is due in large part to the lack of data available to researchers on sexual orientation and gender identity (SO/GI) for patients in US healthcare systems.

In an attempt to combat the lack of data on LGBT patients and reduce health disparities, researchers at the University of California Davis Health System (UCDHS) recently unveiled an updated electronic health record (EHR) that introduces SO/GI data into its system. The goal is to be able to incorporate a patient’s SO/GI data into his or her medical care, to create a more inclusive and data-driven healthcare experience for LGBT individuals. UCDHS is the first US academic health center to incorporate SO/GI data into its EHRs. To enhance care for the LGBT community and provide a framework for other major US healthcare centers moving forward, UCDHS details the program’s implementation, its reception, and how it plans to apply lessons learned to future endeavors.

The EHR allows medical centers to keep track of patient health information over time by compiling patient demographic information, past medical history, nursing notes, physician notes, laboratory data, radiology reports, and other medical records into one document that is accessible to health providers electronically. Leaders at UCDHS believe that integrating SO/GI data into EHRs will reduce disparities by allowing physicians to speak to their LGBT patients about heightened health risks.

The task force began to integrate SO/GI data into the EHRs in June of 2013, while simultaneously offering training sessions on collecting the data. The new data are entered into the EHR in two ways. Patients are able to personally enter their sexual orientation and gender identity into an online questionnaire before their first visit with a doctor, or, alternatively, doctors can enter this information into the EHRs after speaking with the patients. In the latter case, patients are asked to share this information but are also told that they need only respond if they feel comfortable.

Understanding a patient’s gender identity and sexual orientation allows the physician to ask the patient pertinent questions that can change the physician’s plan of care. For example, men who have sex with men (MSM) are 17 times more likely to develop anal cancer than men who only have sex with women. Given that the HPV vaccine protects against strains of the disease associated with anal cancer, knowing a patient’s sexual orientation could reduce anal cancer rates among MSM.

Initial resistance to incorporating SO/GI data into EHRs was strong, especially from UCDHS medical providers who felt uncomfortable asking patients about their sexual orientation and gender identity. The task force launched three key initiatives to address this resistance. First, the health center created internal press releases, which detailed the center’s commitment to the LGBT community. Additionally, the health center partnered with the Human Rights Campaign (HRC) and also requested that the center be publicly evaluated on the HRC’s Healthcare Equality Index, which ranks healthcare facilities on LGBT patient equality. This publicly committed the center to becoming a leader in LGBT healthcare.

After addressing the initial resistance of medical providers, the task force focused on the need for a patient safety net to handle any patient complaints with medical practitioner interviews. In interviewing medical staff regarding their LGBT patient interactions, the task force found that patients often asked staff for a list of LGBT-welcoming medical providers. Consequently, as of July 2014, more than 130 providers have identified themselves as LGBT-friendly on the UCDHS website.

Moving forward, UCDHS looks to apply the lessons learned from this study to its treatment of other marginalized groups, including ethnic and linguistic minority populations, as well as all segments of the LGBT spectrum. It is likely that obtaining SO/GI data will ensure that more physicians ask pertinent health questions that could lead to better health outcomes for LGBT patients. What is certain is that educating medical providers and medical staff on LGBT issues has forced providers to learn new skills to appreciate and respect SO/GI diversity. The UCDHS initiative has been an important first step towards recognizing SO/GI differences as normal, in a way that creates a safer and healthier environment for LGBT patients.

Article Source: Callahan, Edward J, Nicole Sitkin, Hendry Ton, W Suzanne Eidson-Ton, Julie Weckstein, and Darin Latimore. “Introducing Sexual Orientation and Gender Identity into the Electronic Health Record: One Academic Health Center’s Experience,” Academic Medicine, February 2015, 90 (2): 154-160.

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