Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records Workshop Summary (2013) / Chapter Skim
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4 Existing Data Collection Practices in Clinical Settings
4 Existing Data Collection Practices in Clinical Settings
Pages 25-38
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From page 25... ...
• Training health care system staff about working with LGBT people and the sensitivities involved in collecting data on sexual orientation and gender identity is essential for successful implementation of these tools. 1 This section is based on the presentations of Shane Snowdon, Director, LGBT Health & Aging Program, Human Rights Campaign Foundation, and Founding Director, Center for LGBT Health and Equity, University of California, San Francisco; John Knudsen, Chief, LGBTI Practice Task Force, Mayo Clinic; Ronald Copeland, President and Executive Medical Director, Ohio Permanente Medical Group; Alex Gonzalez, Medical Director, Fenway Health; Jesse Ehrenfeld, Assistant Professor of Biomedical Informatics, Vanderbilt University; and Robin Weinick, Associate Director, RAND Health.
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From page 26... ...
This chapter relates some of these health care systems' experiences and includes lessons that they have learned and suggestions for others who want to collect data on sexual orientation and gender identity in their EHRs. PATIENT SELF-IDENTIFICATION IN ELECTRONIC HEALTH RECORDS Each year, hundreds of health care facilities use the online national Healthcare Equality Index (HEI)
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From page 27... ...
EHRs are also envisioned to allow information to be shared more widely, and, in Snowdon's opinion, many lesbian, gay, and bisexual patients do not want that information shared widely, if at all. While EHRs can be used to empower patients, many patients feel that being confronted with routine sexual orientation questions is disempowering.
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From page 28... ...
• If routine sexual orientation questioning is incentivized or other wise encouraged, it will be essential to provide widespread patient education and empowerment activities, to require facilities to have meaningful nondiscrimination policies and staff training in place, and to teach health care providers in a systematic way how to dis cuss sexual orientation sensitively with patients. Concerning this last point, Snowdon said it would be interesting to see an initiative from CMS that would require LGBT nondiscrimination policies to go hand-in-hand with incentivizing data collection.
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From page 29... ...
This data collection effort is being led by the Mayo Clinic's clinical practice committee, which heard a wealth of personal and painful tories that s 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.
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From page 30... ...
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. THE KAISER PERMANENTE EXPERIENCE Like the Mayo Clinic, Kaiser Permanente is also in the early stages of collecting data relevant to sexual orientation and gender identity.
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From page 31... ...
The final phase will implement the process. THE FENWAY HEALTH EXPERIENCE The mission of Fenway Health, an independent, federally qualified health center in Boston, is to enhance the health of the LGBT community and other people in its neighborhoods and beyond through access to the highest-quality health care, education, research, and advocacy, explained Alex Gonzalez.
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From page 32... ...
That kind of data, said Gonzalez, is trackable only by doing a chart review, which is unrealistic for 18,000 patients. Beginning in December 2011, Fenway Health began collecting sexual orientation data on the registration form along with other demographic data, and it added information on gender identity in August 2012 (see Box 4-2)
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From page 33... ...
For gender identity, Fenway Health convened a patient advisory committee and surveyed transgender patients on their preferences. Gonzalez said that since implementing these questions in its information packets and patient profiles, there has been no discernible pattern of non-response to the sexual orientation and gender identity uestions, nor q have there been reports from front desk staff or providers of patients asking why they are being asked these questions.
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From page 34... ...
Ehrenfeld then described some of his work using natural language processing to first identify LGBT and intersex patients from electronic health records that already exist and then determine how LGBT and intersex status affects treatment, diagnosis, and health outcomes. atural N language processing, he explained, uses advanced algorithms and the rules of the English language to analyze free-text data, such as that in unstructured text notes in medical records, for specific information through trial and error.
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From page 35... ...
2. When collecting sexual orientation and gender identity data on health care intake forms, patients should have the right to opt out.
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From page 36... ...
And most of those practices do not have the resources to conduct extensive training programs. Though there are important differences between collecting race and ethnicity data and sexual orientation and gender identity data, there are lessons to be learned from the experience of introducing race and ethnicity data into medical records.
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From page 37... ...
Gonzalez said that Fenway Health's approach to this problem has been to retain the ability to ask about sexual orientation and gender identity in the clinical setting rather than during registration because it is easier to put people at ease and educate them about why this information is important. Snowdon noted that this is not just a problem at the older end of the spectrum -- a large longitudinal study of youth conducted by the Human Rights Campaign found a similar reluctance among youth between 16 and 24 years of age.
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From page 38... ...
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.
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