or gender identity, there is some overlap in terms of fear possibly driving patients away from health settings. Bau commented that there were similarities with language. For example, in some cases when patients are asked if they need language assistance, they refuse because they mistakenly believe it will make them vulnerable to discrimination. In fact, the right to language assistance is guaranteed and could benefit them.

In response to a question from Eva Powell, from the National Partnership for Women and Families, about whether natural language processing could be used in combination with information gathered directly from the patient as a means of improving the quality of the resulting data, Ehrenfeld said that the natural language processing methods were a research tool, not an operational tool. He does not expect natural language processing to be used in an operational setting, though it could be used in a quality improvement setting. He added that natural language processing will not provide useful information if the physician has never asked the patient about sexual orientation or gender identity or if the patient has never volunteered that information.

When asked by Susan Queen from the Office of the Assistant Secretary for Planning and Evaluation at HHS about whether information from a patient portal can be transferred directly to an EHR, Knudsen said that yes it can, and that at the Mayo Clinic, patient-provided information is incorporated into the EHR. Ehrenfeld added that at Vanderbilt, information from the patient portal is first verified by the provider before it is added to the patient’s EHR.

Queen asked Copeland if the response categories for Kaiser’s sexual orientation question was a set of fixed categories or did it prompt the individual to write in a response. Copeland replied that at the present time, the patient writes in the response. He added that in all of their data collection of this type Kaiser tries to have some predetermined responses, but they also want to have the patient self-identify whenever possible. They have found that, in terms of engaging patients, using the terms the patient uses is probably the most effective way to move forward with conversations between patients and clinicians and care teams. In his opinion, this approach is preferable to forcing them to make a choice and fit it into a category that has already been pre-determined.

A participant attending by phone asked about patient autonomy and whether the data collected could be used for research without patients’ consent. Knudsen said that in Minnesota patients sign a form that can remove their data from any future research. This means that even if a researcher has approval from an institutional review board, certain patients can opt out of the research and they are given the opportunity to make that decision when they are seen as patients.



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