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Patient Self-Identification Resources

Collecting Information about Sexual Orientation and Gender Identity

Do your organization’s (electronic) health records offer explicit options for patients to indicate that their current gender identity differs from the gender they were assigned at birth and/or the gender shown on any identification, insurance, or other documents used in admitting/registration?

To receive credit your facility must:
Offer an explicit way for capturing this information (i.e. fields in which this data is collected, not just free form notes).

Documentation of both current gender identity and sex assigned at birth is critical for delivering appropriate care to transgender patients. Some transgender people may not identify as transgender, but only as male or female. In these cases, sex assigned at birth can indicate that the individual is transgender, which allows providers to offer the full range of care such as anatomically appropriate preventive screenings that meets the individual’s needs. Therefore, the current recommended best practice involves asking both sex assigned at birth and current gender identity. Current gender identity, name, and pronouns should be documented and used for communication with the patient, as well as things like name bands and room assignments.

Resources:

  • The Fenway Institute and Center for American Progress have an online guide on collecting LGBT status in electronic health records called, “Do Ask, Do Tell.” This toolkit provides valuable information on why updating your Electronic Health Records is important to providing inclusive care, while also offering resources on how to make these changes at your facility.
  • Read more about how UC Davis Health System added sexual orientation and gender as EHR elements as well as the original journal article published by UC Davis. You can also learn more about their efforts by watching this short video.
  • Transgender patients should be provided explicit options to indicate that their current gender identity differs from the gender assigned to them at birth and/or the gender shown on any identification, insurance or other documents used in admitting/registration. This information should ideally be flagged in the electronic record to alert staff of the patient’s preferred name and pronouns. Read Electronic Medical Records and the Transgender Patient (Deutsch et al., 2013) from the World Professional Association of Transgender Health (WPATH) to learn about their recommendations and supporting rationale for developers, vendors, and users of EHR systems with respect to transgender patients.
  • Read The Fenway Institute guide “How to Gather Data on Sexual Orientation and Gender Identity in Clinical Settings,” detailing best practices on asking patients about their LGBT status.
  • Read the summary of the Institute of Medicine’s workshop Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records, specifically the section entitled “Developing and Implementing Questions for collecting Data on Sexual Orientation and Gender Identity.”
  • If your hospital or health system uses Epic, your team should reach out to Epic to receive a copy of their SOGI Strategy Guide to help determine the best way to gather and store SOGI data in your system. You can also reach out to Epic’s SOGI work group for questions that you may have about the process.
Do your (electronic) health records use a two-question process to collect data on gender identity (ie. first asking current gender identity and then asking sex assigned at birth)?

To receive credit your facility must:
Offer an explicit way for capturing this information (i.e. fields in which this data is collected, not just free form notes).

Resources:

Here are some examples of facilities that use a two-question process to collect data on gender identity:

Does your organization provide employees with training on how to collect and record gender identity data?

To receive credit, a facility must:
Have training specifically address how to ask these questions in a respectful manner and how to record them within the hospital’s EHR. General LGBTQ trainings do not count.

A critical step in the process of effectively implementing SO/GI data collection in clinical settings is the training of staff on LGBTQ health disparities, and on how to use SO/GI data and manage it in ways that meet the clinical needs of LGBTQ patients while concurrently protecting confidentiality and privacy. Each facility will also need to train staff on how to collect and record SO/GI data within the facility’s electronic health records.

Resources:

  • The Center for Excellence in Transgender Health has an online learning module on acknowledging Gender and Sex that includes best practice scenarios for asking questions about sex and gender.
  • A web-based training entitled “Catching Everyone in America’s Safety Net: Collecting Data on Sexual Orientation (SO) and Gender Identity (GI) in Health Care Settings” is available on the Medicare Learning Network. You can sign up for a free account to access the training.

Here are some examples of facilities that provide employees with training on how to collect and record gender identity data: 

Do your organization’s (electronic) health records offer explicit options for capturing the patient's pronouns in use and prominently displays these pronouns in the banner or a pop-up?

To receive credit, a facility must:
Offer an explicit way for capturing this information (i.e. fields in which this data is collected, not just-free-form notes).

Resources:

  • Check out this "Creating Equal Access to Quality Health Care for Transgender Patients: Transgender-Affirming Hospital Policies" report done in collaboration among HRC, Lambda Legal, and the LGBTQ Rights Committee of the New York City Bar Association, with pro bono assistance from Hogan Lovells US LLP and Proskauer Rose LLP.
  • The National LGBT Health Education Center illustrates the importance of including a patient's pronouns in their "Affirmative Care for Transgender and Gender Non-Conforming People: Best Practices for Front-line Health Care Staff" report.
  • The Fenway Institute, in collaboration with NORC at the University of Chicago, developed three guides to support you in your efforts of mobilizing your healthcare facility to begin collecting data on sexual orientation and gender identity (SOGI). 
    • This tip sheet suggests several strategies that could be utilized in order to most effectively push your organization to collect SOGI data. 
    • This FAQ guide offers clear answers and in depth responses to potential questions that your health organization may raise in regards to collecting data on sexual orientation and gender identity.  
    • This final toolkit presents best practices and approaches on how to actually begin implementing SOGI data collection at your organization. 

Here is an example of capturing patient's pronouns through an EHR banner: 

Do your organization's (electronic) health records capture the patient’s name in use if it differs from their legal name AND prominently displays this name in the banner or a pop-up so that front line staff and providers will see this information?

Gathering patient gender identity and pronoun information is critical to providing affirming and inclusive care. Collecting a patient’s chosen name is also necessary in creating a safe healthcare environment for all patients. 

To receive credit, a facility must:

Offer an explicit way of capturing a patient’s name if it is different from their legally given one or different from their insurance records. The patient’s name must then be displayed prominently in a banner or pop-up for clear usage by all healthcare staff. 

Resources:

The Fenway Institute’s guide, Ready, Set, Go!, offers tips and best practices on to collect patient data regarding sexual orientation and gender identity. 

Examples:

  • Penn Student Health Service’s Electronic Health Record system demonstrates how to not only collect a patient’s chosen name, but additionally how to display the name for correct usage by healthcare staff
Do your organization’s (electronic) health records offer explicit options for capturing a patient's organ inventory?

To receive credit, a facility must:
Offer an explicit way for capturing this information (i.e. fields in which this data is collected).

Resources:

Check out this "Electronic Medical Records and the Transgender Patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group" publication on how to capture a patient's organ inventory.

Here are some examples of facilities that capture a patient's organ inventory through their EHRs: 

Do your organization’s (electronic) health records offer a way for indicating a patient’s sexual orientation, if they volunteer this information for inclusion in their records? Does your organization provide employees with training on how to collect and record sexual orientation data?

To receive credit, a facility must:
Offer an explicit way for capturing this information (i.e. fields in which this data is collected, not just-free-form notes).

Resources:

  • View a video from Fenway on how to ask an adult patient about sexual orientation and gender identity (SOGI) data.
  • View a video from Fenway on how to ask an adolescent patient about SOGI data.
  • See additional resources listed in the previous question regarding the collection of data on gender identity.

Examples:

  • Strong Memorial Hospital of the University of Rochester records preferred name, sexual orientation, sex assigned at birth, and current gender identity.
  • Here is a screenshot of how one facility collects sexual orientation data in their EHR.
  • Texas-based Project Vida Health Center uses eClinical Works to record patients’ sexual orientation.
Does your organization provide employees with training explicitly reminding them that LGBTQ status is confidential patient information?

To receive credit, a facility must:
Have this training be in addition to standard HIPAA training, or be in the form of a special section within HIPAA training that addresses the specific privacy needs of LGBTQ patients.

Resources:
Transgender patients especially are often the victims of privacy breaches, where staff or providers might feel the need to “warn” the patient’s roommate about the patient’s transgender status, or invite other staff or providers to come see the patient. These privacy violations are not only unethical and illegal, but add to the high levels of discrimination transgender people already face in accessing healthcare, and discourage these patients from continuing or returning to seek care. For more information, see our page on HIPAA and LGBT Healthcare Equality.

Examples:

  • Keck Medical Center of USC uses a PowerPoint presentation to inform staff on the importance of confidentiality as it relates to a patient’s LGBT status.
  • Montefiore Medical Center emphasizes that the release of protected health information, including LGBTQ identity, is a HIPAA violation.
  • At NYC Health and Hospitals – Gouverneur, a member of the LGBTQ community presented on best practice tips, including HIPAA privacy and supportive patient-centered care.
  • AtlantiCare Regional Medical Center cites the U.S. Department of Health and Human Services and the National Center for Transgender Equality in their HIPAA Education Refresher training, which reminds staff and employees that LGBT status is confidential information.
  • This handout by VA Louis Stokes Cleveland Medical Center encourages privacy protection to ensure the best care for LGBT veterans.
  • The Columbus Public Health Department reminds employees that sexual orientation and gender identity fall under protected health information.

Health Records that are Inclusive of All Families

Do your organization’s (electronic) health records offer explicit options for patients’ parents beyond “mother” and “father” (e.g., “parent/guardian 1, parent/guardian 2, parent/guardian 3”), to be inclusive of same-sex parents and other diverse families?

To receive credit, a facility must:
Offer an explicit way of recording diverse family structures.

There are many kinds of family structures in our community today and hospital records should have ways to record these relationships. This is a practice that will help provide a welcoming environment for all patients.

This is important not only for same-sex parents, but for the realities of many families, where the traditional options of “mother” and “father” do not welcome a child raised by grandparents, a transgender parent, adoptive or foster parents, or other types of families. If you need information about the child’s legal guardian or birth parents, you can include separate questions for “birth parent” and “legal guardian,” with the option to duplicate answers from the parent/guardian section.

Examples:

  • Mercy Bakersfield - Downtown's electronic health records clearly allow for diverse household configurations.
  • See a screenshot that shows how Charles River Community Health captures parent information in their EHR.
Does your organization record patient’s marital or relationship status, offering options such as “single” and “married”?

To receive credit, your facility must:
Offer an explicit way of recording a patient’s status with an unmarried partner.

There are many kinds of family structures in our community today and hospital records should have ways to record these relationships. Many facilities recognize unmarried partners with categories such as “life-partner,” “domestic partner” or “significant other.”

Here are some examples of facilities that allows patients to record their marital or relationship status in LGBTQ-inclusive ways: