and business rules around these data elements and codes. An external standards team will develop language and standards that will then need to be endorsed and approved by multiple stakeholders and Mayo Clinic leadership, all of which will be coordinated by the enterprise project management office at the Mayo Clinic. As a final note, Knudsen said that the goal of all of this activity is to collect data that will be able to trigger alerts for screening and preventive health services, track quality metrics, and create research opportunities.


Like the Mayo Clinic, Kaiser Permanente is also in the early stages of collecting data relevant to sexual orientation and gender identity. Kaiser, as the nation’s largest not-for-profit health plan, has long served a diverse population that today comprises more than 230 granular ethnicities speaking more than 170 different languages, said Ronald Copeland. As a result, Kaiser has had a great deal of experience managing and optimizing diversity to improve care for its patients and enhance the performance of its workforce.

When Kaiser first introduced its EHR and began collecting data on its membership, its internal KP Pride Caucus, which consists of LGBT employees, questioned why the EHR collected data on race, ethnicity, and language, but not sexual orientation and gender identity. The answer was that the organization did not have the capacity to collect these data and it had concerns about the sensitive nature of asking questions about sexual orientation and gender identity. Instead of jumping right into what could have been a troublesome area, the leadership at Kaiser intended to phase these questions in based on internal research and in conjunction with an education and awareness campaign.

To drive this effort forward, Kaiser created two study groups, one focused on data collection and implementation, the other on referral processes to physicians who were knowledgeable about and sensitive to issues specific to LGBT populations. The data collection study group operated from the assumptions that future legislation will require and regulate the collection of LGBT data and that data will be collected in HealthConnect EHR. It also assumed that technical issues about data structure and definition of terms could be overcome based on experience with race, ethnicity, and language data and that while the final implementation may look different in each of the organization’s regions, the data format would be identical. Finally, the study group assumed that individuals will have the right to refuse to answer questions about sexual orientation or gender identity. The study group recommendations are presented in Box 4-1.

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