The Mayo Clinic, said John Knudsen, has only recently begun an effort to gather information on sexual orientation and gender identity. He noted that the Mayo Clinic started on its path thanks to what he called a union of forces that included four reports—HHS’s Healthy People 2020 report, the IOM’s 2011 report on the health of LGBT people, the Joint Commission report Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community, and the HEI survey—as well as a receptive leadership that includes clinicians and the Mayo Clinic LGBT Employee Resource Group. This resource group, explained Knudsen, started the process by requesting that the Mayo Clinic identify a group of providers in its primary care practice who were “LGBT-friendly,” and this led to an effort to collect data on some of the difficulties experienced by both LGBT patients and employees.

This data collection effort is being led by the Mayo Clinic’s clinical practice committee, which heard a wealth of personal and painful stories that patients and employees shared about suboptimal care they had received from the organization. Mayo Clinic’s leadership responded by creating the LGBT Practice Task Force, which was charged with studying the situation with regard to LGBT people and to develop recommendations that would facilitate and sustain an inclusive and welcoming environment for the Mayo Clinic’s LGBT patients and families. This effort also included intersex people, those born with an ambiguity about their sex assignment.

One of the factors complicating efforts to collect data on LGBT and intersex people at the Mayo Clinic is that it is not just a hospital—it includes group practices and multispecialty practices based in Arizona, Florida, and Minnesota, and a regional health care system that includes 71 communities, 900 physicians, and 12,000 allied health staff spread across Iowa, Minnesota, and Wisconsin. In addition, the Mayo Clinic system uses three different EHRs. To address this last issue, the Mayo Clinic system has developed an enterprise-wide data governance and health information coordination policy that is creating uniformity and standardization across the entire system.

Another complication arises from the fact that the Mayo Clinic system uses patient portals to input information, but this information is managed separately from the EHR. Knudsen explained that there is currently no mechanism or interface for transmitting data from the patient-provided information portals into the EHR. He noted, too, that changes are likely to be slow in being enacted, giving the example of the more than 4 years it took to make a change in the collection of race and ethnicity data based on recommendations from a research team. In terms of LGBT data, a stewardship group is developing a recommended list of data elements

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