Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records Workshop Summary (2013) / Chapter Skim
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5 Developing and Implementing Questions for Collecting Data on Sexual Orientation and Gender Identity
5 Developing and Implementing Questions for Collecting Data on Sexual Orientation and Gender Identity
Pages 39-50
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From page 39... ...
We aren't there yet." However, researchers are working toward that perfect world, and 1 This section is based on the presentations of JoAnne Keatley, Director, Center for Excel lence for Transgender Health, University of California, San Francisco; Kristen Miller, D irector, Question Design Research Laboratory, National Center for Health Statistics; David Grant, Director, California Health Interview Survey; Edward Callahan, Professor of amily F and Community Medicine, University of California, Davis, Health System; and Denise R asmussen, Epic Systems Corporation.
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From page 40... ...
GENDER IDENTITY DATA COLLECTION A working definition of the word transgender, said JoAnne Keatley, is a person whose gender identity or gender expression differs from the sex assigned to them at birth. She reiterated a comment made earlier in the workshop that many transgender people do not like to self-identify as transgender, instead wanting to have their affirmed gender recognized without it being connected to their transgender history.
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From page 41... ...
DEVELOPING A "PERFECT" SEXUAL IDENTITY MEASURE Developing the sexual identity question for the National Health Interview Survey (NHIS) involved multiple steps that Kristen Miller described, starting with settling on what exactly the survey needed to measure.
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From page 42... ...
ASSESSING SEXUAL IDENTITY AND BEHAVIOR IN CALIFORNIA'S DIVERSE POPULATION The California Health Information Survey (CHIS) is an omnibus, multilingual, public health telephone survey of 42,000 to 56,000 California households conducted biannually since 2001 and continuously since 2011.
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From page 43... ...
One caveat is that questions designed for data collection using registration forms or patient portals can be difficult to use in a phone survey, so questions are often adapted for that particularly medium, as well as to account for the linguistic diversity in California. Extensive testing and training and ongoing monthly monitoring of live interviews completes the process.
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From page 44... ...
He added that the CHIS results show that it is feasible to collect relatively accurate information about sexual identity and behavior in a diverse population, but that the wording of questions is important, as is the setting in which the questions are asked.
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From page 45... ...
One tangible result of this attitude change is the development of a new medical school curriculum that incorporates LGBT health issues across the entire 4-year process. One of the most compelling pieces of evidence for including sexual orientation and gender identity data in EHRs, said Callahan, comes from Caitlin Ryan and the Family Acceptance Project at the University of C alifornia, San Francisco.
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From page 46... ...
What would be helpful to Epic as an EHR vendor, she said, is a more standardized way to document information about sexual orientation and gender identity and more direction on where each birth sex, legal gender, and identified gender should be used in terms of billing, health information exchanges, clinical decision support, and preparing materials designed for patients. Epic is also concerned about who should document this information and who should be allowed to see it.
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From page 47... ...
There was some discussion around the term "sexual orientation." While Miller asserted during her talk that the term is not a measurable concept, Harvey Makadon pointed out that the term is commonplace and any attempt to substitute "sexual identity" or another term for it would be challenging. Miller responded that "sexual orientation" is a catchall phrase and does not provide constructs around which scientific questions can be developed.
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From page 48... ...
In response to a question from Harvey Makadon about how Epic is working with clients to coordinate efforts to develop a common approach to collecting sexual orientation and gender identity data in EHRs, asmussen explained that Epic had an LGBT breakout group at R its user group meeting in September 2012. This user group had 10 to 15
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From page 49... ...
Ignatius Bau asked if sexual orientation was a field that users have customized and added to Epic products. Rasmussen said requests for adding a field on sexual orientation had come up and that it was relatively easy to do.
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