There are several categories of information on sexual orientation and gender identity (SO/GI) that are important for any primary care clinic to collect from its patients:
- Sex designated at birth
- Gender identity
- Chosen name
- Sexual orientation
There are many reasons why the clinic should collect SO/GI information. Having such information can:
- Increase comfort among SGM patients;
- Assist direct service provides to deliver more effective patient-centered care;
- Encourage staff to provide more culturally sensitive services to SGM patients;
- Facilitate the monitoring of the quality of care to SGM patients; and
- Identify disparities in health outcomes and services for SGM patients and determine if tailored interventions are needed.3
Documentation of SO/GI information should occur with all patients, beginning with registration and intake, updated annually, and incorporated into the electronic health record (EHR). Informed patients that they can request updates to this information at any time if their gender identity changes. When feasible, patients should be allowed to enter this information electronically through a patient portal at home or by using a kiosk or tablet at the clinic. Data should be entered directly into the EHR when a patient completes a hard-copy form. Data entry should occur in a timely fashion, and the same procedure applies if providers ask verbally about SO/GI information when taking a patient’s health history.3
An “organ inventory” should be compiled for all patients and integrated into the EHR.4 This inventory documents all organs present in the patient’s body (e.g., appendix, cervix, testes) and if surgeries have removed or altered these. Reviewing an organ inventory before an exam or other clinical procedure is a key to quality care. This task helps health professionals avoid making erroneous assumptions about a patient’s body and internal organs based on their gender identity, designated sex at birth, or appearance (e.g., a female-identified person designated female at birth may have a cervix or not due to surgical removal OR a male-identified person designated female at birth will lack a cervix). Reviewing such inventories is fundamental to quality care for all patients, not simply for those who are gender minority. The SO/GI data must be recorded in ways that will allow providers and staff to easily locate it. Ideally, the patient’s chosen name, pronouns, and gender will be displayed first so that relevant staff know how to address the patient. Their legal name should be available for those who deal with insurance and billing issues. It is also helpful to have the system set up to search a patient’s record using their chosen name.
It may be necessary to modify hard-copy and electronic registration and intake forms and create new fields in the EHR to capture SO/GI data. Initiating changes to the EHR may require a year or longer to complete, so a solid action plan will keep the process on track. Template 8.2 in Chapter 8 features a sample action plan for upgrading EHRs. There are also “how-to” resources that offer clear guidance on making such modifications. We encourage you to access these resources by clicking the hyperlinks below:
Fenway Institute: Ready, Set, Go! Guidelines and Tips for Collecting Patient Data on Sexual Orientation and Gender Identity (SOGI) – 2020 Update
Fenway Institute: You’ve Built It… Now What? Applying Sexual Orientation and Gender Identity Data to Clinical Quality Improvement and Decision Support
Electronic Medical Records and the Transgender Patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group
Sample EHR Intake Form with Organ Inventory and Transition History
Screenshot of University of Pittsburgh Medical Center electronic medical records system, Epic Software.
While some providers and staff may feel hesitant about collecting SO/GI information from their patients, most patients do not have problems answering SO/GI questions. Training should be given to all staff involved in collecting information from patients to increase understanding and reduce their discomfort. Training for clinical staff should focus on asking and communicating about SO/GI information with patients and their families. For non-clinical staff, the training might cover how to respond to patient questions and concerns about SO/GI data and patient information needed for insurance claims. Clinical and non-clinical staff should both learn how to enter SO/GI data into the EHR. More information about sensitivity training for employees is in Section 4 below.
Finally, it is a good practice to educate patients about the importance of sharing personal SO/GI information with providers and how the clinic will use this information. One way to do this is to add a short paragraph explaining the purpose of this information and a list of terms on the back of registration and intake forms. Brochures can also be displayed and shared in the waiting areas. It may be necessary to translate SO/GI terms and questions into primary languages spoken in the community. Clinics that routinely engage interpreters to translate for patients should assure that the interpreters are familiar and comfortable with the appropriate terms in the languages they use. The terms and questions can be reviewed by staff and patients to clarify translations. Some patients may need assistance in understanding the SO/GI questions, such as older patients or patients with limited literacy.3