Collecting Sexual Orientation and Gender Identity in EHRs: The Fenway Experience. Alex Gonzalez MD, MPH Medical Director Fenway Health

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1 Collecting Sexual Orientation and Gender Identity in EHRs: The Fenway Experience Alex Gonzalez MD, MPH Medical Director Fenway Health

2 Mission to enhance the health of the lesbian, gay, bisexual and transgender community and other people in our neighborhoods and beyond through access to the highest quality health care, education, research and advocacy. 2

3 About Fenway Independent 501(c)(3) FQHC located in Boston, Massachusetts with 4 clinical sites Provide primary care, specialty services, behavioral health, optometry, dental, HIV counseling & testing, alternative insemination and more Served 18,000 unique patients in CY 2011 Approximately 50% lesbian, gay, or bisexual 650 transgender 3

4 Historical practice of including sexual orientation and gender identity in EHR Fenway has used the GE Centricity EHR system since 1997 Sexual orientation (including identity & sex of partners) and gender identity information has been collected in clinical encounters and recorded in EHR provider notes from the start 4

5 Historical practice of including sexual orientation and gender identity in EHR In past two years, Fenway has improved and systematized the collection of SO & GI data Patient registration process and updates through the patient profile are now the primary mechanisms for systematically collecting SO & GI information from all of Fenway s patients Clinical encounters, including sexual health history and gender identity development history, remain vital for the collection of comprehensive information 5

6 Current practice of including sexual orientation and gender identity in EHR SO & GI is collected on the registration form in a section with other demographic information (eg. income, employment, race, ethnicity, marital status) Text indicates that this information is for demographic purposes only and will not affect your care Patient profile is generated at each visit and information can be updated through conversation with provider or staff 6

7 Current practice of including sexual orientation and gender identity in EHR Pamphlet on patient rights included with registration materials Includes explanation of confidentiality Articulates a philosophy of respect for each patient as an individual with unique health needs 7

8 Current practice: sexual orientation identity question Do you think of yourself as: Lesbian, gay, or homosexual Straight or heterosexual Bisexual Something else Don t know 8

9 9 Current practice: gender, sex, and transgender identity What is your gender? Female Male Genderqueer or not exclusively male or female What was your sex at birth? Female Male Do you identify as transgender or transsexual? Yes No Don t know

10 10 Centricity (CPS) Registration Screen

11 11 Centricity (CPS) Patient Profile

12 Process for development of sexual orientation and gender identity questions Involved providers, patients, researchers, data systems & management staff For sexual orientation identity, pilot tested two versions (one with write-in option and one without) For gender identity, convened a patient advisory committee and surveyed transgender patients on their preferences 12

13 Experiences fielding and recording sexual orientation and gender identity No discernible pattern of non-response to the SO & GI questions Have not had reports from front desk staff or providers of patients asking why we ask LGBT patients seem to appreciate being asked the questions Non-LGBT patients seem to be unaffected by the questions 13

14 Additional considerations for transgender patients Third party payment systems require that we record name and sex in the EHR as they are listed with the insurer This can be an alienating experience as insurance information often does not match identity Some are in process of making name and sex changes with insurer Some are unable or unwilling to make changes One reason not to make changes is to maintain coverage for sex-specific procedures and screening tests 14

15 Additional considerations for transgender patients To meet the needs of transgender patients, customizations must be programmed into EHR and implemented in operational systems Examples of customizations we use are: Ask preferred name and preferred gender pronoun on registration form and record in patient alert field Have programmed the EHR to display the patient alert field at the top of the chart every time the chart is opened Print a patient profile at each visit that includes a name alert flag 15

16 Additional considerations for transgender patients Examples of customizations (cont.): Physically hand off the patient profile from front desk staff to medical assistants so that patients are called from the waiting room by their preferred name Include the patient profile as part of the packet that MA & provider refer to in the clinical visit Route transgender patients seeking hormone treatment to the Trans Health Clinical Team who review and add the ICD-9 code for endocrine disorder once cleared for treatment 16

17 Additional considerations for transgender patients Operational systems to respect identity preferences are critically important I found it refreshing that I could state my preferred pronouns and preferred name and have those honored by all staff while at Fenway Health. It makes me feel like a whole person to receive the respect of the staff. Our operational systems work well, but are not without limitations 17

18 Additional considerations for transgender patients Even though the questions are appreciated, they are not always easy for patients to answer I understand from a medical perspective it is most healthy for me to identify my biological gender [on medical forms]. Though I wish it were not the case, I know I need to continue to make sure even my unwanted parts are healthy and checked on every now and again. I think it's still a little uncomfortable to have to answer all these questions, but it sure beats not being asked! 18

19 Clinical importance of recording this information Gender identity: breast / cervical cancer screening Sexual orientation: hepatitis A screening and immunization 19

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