Capturing Sexual Orientation/Gender Identity Data through HIT

Capturing Sexual Orientation/Gender Identity Data through HIT

This blog explores health informatics—a collaborative activity connecting people, process, and technologies to produce trusted data for better decision-making.

By Jami Woebkenberg, MHIM, RHIA, CPHI, FAHIMA


It was just over a year ago, at the 2017 AHIMA Annual Convention and Exhibit, that I first attended a session on the disparities that our LGBTQ population faces in healthcare and the issues of capturing sexual orientation/gender identity (SO/GI) information in the electronic health record (EHR). I have a family member and friends who are part of the LGBTQ community, and that presentation ignited my passion to continue to support and bring awareness to these issues in hopes of breaking down pre-conceived ideas, creating a more inclusive environment, and capturing necessary information in the EHR to support these goals and to help with future research and treatment of LGBTQ patients. No matter what your personal or religious beliefs may be, this topic is an issue that needs to be addressed from a medical and a human rights perspective. Capturing SO/GI information will assist in providing more patient-centered treatment/care, encourage staff to provide more culturally-sensitive services to all patients—including those that are LGBTQ, and reduce health disparities through monitoring of the quality of treatment/care to LGBTQ patients.

It is important to have an understanding of a few basic definitions:

  • Sexual orientation: how a person characterizes their emotional and sexual attraction to others
  • Gender identity: what an individual’s internal sense tells them that their gender is
  • Sex: may also be referred to “sex assigned at birth,” based on external genitalia
  • Gender expression: how you present your gender to society through physical appearance, dress, mannerisms, etc.
  • LGBTQ: lesbian, gay, bisexual, transgender; the letter “Q” may also be added to the acronym LGBT, which may stand for “queer” or “questioning”

Although the most recent Promoting Interoperability standards, previously referred to as Meaningful Use, require EHR vendors to create systems in which users can record and collect gender identity information, it is not required of providers to collect the information at this time. A provider is currently only required to collect a patient’s gender as male, female, or unknown. The EHR may allow for further capturing of sexual orientation and gender identity through social history fields, but the information may not be captured in fields that are easily or widely viewed by those involved in the care of the patient (i.e., not specifically in demographic fields). Among other issues, it could result in the patient not being called by the preferred name and/or by the preferred pronouns. There may also be issues with reporting of the data for quality improvement or future research if information is not captured in discrete fields.

We cannot resolve all of the issues and disparities without guidance and support from other stakeholders, such as regulators, payers, and health information technology (HIT) vendors—to name a few. But there are steps that you can take as a health information management professional.

First of all, ensure that you are educated on the current regulatory requirements (federal, state, local, and any accreditation bodies such as the Joint Commission) related to treatment of LGBTQ patients, name changes, collection of data, and privacy of information. Many resources are available (including those listed at the end of this blog post).

If organizational policies and procedures have not yet been created, work with your organization’s administration, human resources, and/or legal staff to create guidelines on how SO/GI information will be captured, staff will be educated, and the information will be used, including privacy guidelines. It is important to understand how SO/GI information is collected within your registration system, EHR, and other HIT systems as well as through any paper-based forms. Document your organization’s workflows and practices, research best practices, and understand that what may be required from a payer may not always be aligned with either of these. This is an area where communication and education with the patient may also be necessary in order for an insurance claim to be paid (i.e., patient identifies as a male; the sex assigned at birth is female, and the patient requires a pap smear). There may also be differing needs for pediatric patients than there are for adult patients. Advocate for collection of SO/GI data through discrete fields with all HIT vendors, including registration and EHR systems.

Lastly, don’t be afraid to ask—in my experience, individuals that are LGBTQ would rather have you ask what name and pronoun to use when addressing them. Open communication is an important step in becoming an effective ally.

Additional Resources:


Jami Woebkenberg is director, AZ West HIMS Service Center at Banner Health.

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