By Julie Pursley Dooling, MSHI, RHIA, CHDA, FAHIMA; Stevan Hidalgo, MS, RHIA, CHPS; and Jami Woebkenberg, MHIM, RHIA, CPHI, FAHIMA


Healthcare organizations in the US are increasingly recognizing that a welcoming, inclusive staff culture is crucial in how we address and collect trusted data for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) patient population.

Health information professionals struggle with the overall data integrity from collection to access and management of sexual orientation and gender identity (SO/GI) data because many health information systems today do not allow for standardized SO/GI data collection. Change is needed in how health information technology (HIT) systems collect, process, safeguard, and manage patients’ protected health information.

A recent poll conducted during an education session at the AHIMA19: Health Data and Information Conference in Chicago, IL, addressed the following questions:

  • Whether their respective organizations were capturing SO/GI data
    • 46 percent of the respondents said yes
    • 27 percent said no
    • 27 percent were unsure
  • Whether their organization has policies specific to transgender patients
    • 33 percent said yes
    • 31 percent said no
    • 36 percent were unsure
  • Whether their organizations had a training program related to diversity and inclusion, including elements related to sexual orientation and gender identity
    • 59 percent said yes
    • 24 percent said no
    • 17 percent were unsure

Some electronic health record (EHR) vendors need to update their modules to capture data such as pronouns (he/him, she/her, they/them), preferred name, sex assigned at birth for transgender individuals, an anatomy or biological inventory form to inform clinical decisions, and legal sex to inform workflows such as coding and billing.1

The National LGBT Health Education Center, through Fenway Health, collects the following data elements at registration:

  • Legal name
  • Preferred name
  • Pronouns
  • Legal sex
  • Sexual orientation
  • Gender identity
  • Assigned sex at birth2

While these examples of SO/GI data element collection demonstrate forward movement, there is much work to be done to update systems—including needed workflows. Health information professionals should advocate for these important discrete SO/GI data fields by engaging with EHR, health information systems, registration, and practice management vendors. Providing education to industry partners, payers, and staff should include care studies or scenarios to help complete a picture of why change is needed.

Consider the following example of a non-inclusive data mismatch. A patient undergoing a male-to-female (MTF) transition presents at registration with the physical appearance of a female. The registrar, who has not received sensitivity training pertaining to the EHR, does not include SO/GI data elements to capture data such as sex assigned at birth, legal sex, or preferred pronoun/name. The patient provides her name to the registrar and since they have not been trained to ask proper questions, the registrar proceeds with querying the name given to find her record in the master patient index (MPI). The registrar does not find the patient’s source record and creates a new record, which instantly creates a duplicate record as well as a situation in which the patient’s records are not inextricably linked.

This scenario could present a patient safety issue during the visit if the care provider cannot locate crucial treatment information such as allergies, prior medical conditions, or current medications. Matching rates would improve if the registrar had undergone sensitivity training with suggested questions/talking points to assist with identifying the patient to their unique health record.

Opportunities for Sensitive Data Collection

The collection of sensitive SO/GI information is conducted at different points throughout the patient’s visit. Organizations may decide that a clinical provider is the best person to ask sensitive questions. Since registrars or front office staff are often the first to greet the patient, they play a vital role in determining if the initial data collected at the point of registration is complete and trustworthy. SO/GI information collected at the point of registration will need special attention. As stated in the above scenario, training staff to collect data should be included in the organization’s sensitivity training as well as EHR training.

One central piece of information that needs to be collected and easily visible in the EHR is the patient’s preferred name. Having record of this name in addition to the proper pronouns is vital to delivering personalized customer service for many LGBTQ patients. It should be noted that in some information systems, the preferred name field is used for a patient’s nickname. A clear, delineated policy and procedure needs to be in place to assist staff on how and when the field should be used.

The Fenway Institute uses color-coded pronouns in its EHR.3 See the side bar below for an overview of the color-coding system.


Color-Coded Pronouns Used by the Fenway Institute

Color Pronoun Explanation
Pink She Use this pronoun color block when patient pronouns are always She series
Green He Use this pronoun color block when patient pronouns are always He series
Yellow They Use this color block when the patient pronouns are always They series
Purple Ask Use this pronoun color block when patient pronouns are fluid or not He/She/They series
White None Use this pronoun color block when patient does not want any pronouns used
Green/Pink He or She Use this pronoun color block when patient pronouns are either He or She based on gender presentation at the time of the visit
Green/Yellow He or They Use this pronoun color block when patient pronouns are fluid and He or They are okay
Pink/Yellow She or They Use this pronoun color block when patient pronouns are fluid and She or They are okay


Staff must create a sense of trust so that patients know their SO/GI data are protected through HIPAA and that they won’t be shared without patient consent, except for those instances allowed by HIPAA for treatment, payment, and healthcare operations.

In addition to focusing on data collection and customer service, organizations should review their current policies and procedures. This may mean amendment of policy or creation of a new policy. Federal and state regulations as well as guidelines from accrediting bodies should be consulted so that policies are aligned. For more information and policies and regulations, refer to AHIMA’s Practice Brief titled “Using Population Health, Inclusive HIM Practices to Better Treat LGBTQ Patients,” available online in AHIMA’s Body of Knowledge at

Today, the terms “sex” and “gender” have typically been used interchangeably in the MPI. With the increased awareness of changes needed, systems are slowly catching up. In addition to preferred name, legal sex, and sex assigned at birth, other nonrequired fields include “gender identity,” which collects how the patient identifies (e.g., male, female, genderqueer), and “sexual orientation,” where the patient identifies their individual sexual or romantic attractions (e.g, heterosexual, gay, lesbian, bisexual, and queer).

In a growing number of states, parents can opt to not have their child’s sex identified on the birth certificate. New York City, California, Oregon, New Jersey, Colorado, and Washington state have passed legislation stating that an individual may change the gender assigned at birth.4 As of the writing of this article, New York, Washington, Colorado, and California allow the parent to opt out of putting the sex at birth of the newborn on the birth certificate and allow an “X” in its place.

Workflow and Data Accuracy

Needing to change the patient’s legal sex in the information system in order to process the bill—or bill drop—is one example where system incompatibility is evident. If a billing code is a male-only or a female-only code, this action may be necessary. The action of changing the sex must be conducted by a select number of personnel with appropriate access and training to closely monitor and manage the process.

In addition, payers may have different requirements on how to submit a claim for a transgender patient who is receiving diagnostic testing or procedures that otherwise conflict with the patient’s sex assigned at birth or legal sex. The organization should investigate the particular payer’s billing requirements before submitting the claim. The condition code 45 and modifier code KX is a workaround. For example, a provider may enter an estrogen order for a trans-female, but if the EHR does not reflect the updated gender, the system will reject the order due to gender-prescription incompatibility.

Gender should be based on the patient’s insurance card or approved identification card. Policies should be implemented to provide direction and guidance when a LGBTQ patient changes their name and/or gender. It must include the requirement of having a legal document such as driver’s license, passport, birth certificate, or court order when requesting a name change in addition to changing the name in the registration system, MPI, enterprise MPI (EMPI), or EHR. Many organizations already have policies and procedures related to name changes such as in cases of adoption, marriage, or divorce. This type of policy should extend to any patient who wants to make a name change (nickname exempt).

If the organization’s current technology does not allow for capture or modification of certain elements mentioned above, identify another place in the EHR to capture the information and ensure easy access and visibility to the pronoun and preferred name for staff who need it.

Coding and billing for this patient population has its own unique challenges within our health information systems and current workflows.

When organizations struggle to collect and/or change the gender in information systems, they can have issues with the the patient’s bills. An example of this situation is the new gender not being the same as the listed insurer/guarantor, which can lead to time delays and potential denial issues. A proactive workaround may include accompanying physician documentation of the new gender with the bill denial and contacting the state insurance commission if problems persist.

The need for accurate code assignment is an important factor in improved data accuracy. The condition code 45 and modifier code KX is a workaround.

Condition code 455 billing instructions for institutional providers: Institutional providers are to report condition code 45 on any inpatient or outpatient claim related to transgender, ambiguous genitalia, or hermaphrodite issues. This claim level condition code should be used by institutional providers to identify these unique claims and alert the plan that the gender/procedure or gender/diagnosis conflict is not an error, allowing the sex-related edits to be bypassed.

Modifier code KX billing instructions for physicians and nonphysician practitioners: The KX modifier is to be billed on the detail line only with the procedure code(s) that is gender-specific for transgender, ambiguous genitalia, and hermaphrodite beneficiaries. Note: The KX modifier is a multipurpose informational modifier and may also be used in conjunction with other medical policies. Physicians and nonphysician practitioners should use modifier KX with procedure codes that are gender-specific in the particular cases of transgender, ambiguous genitalia, and hermaphrodite beneficiaries. Therefore, if a gender/procedure or gender/diagnosis conflict edit occurs, the KX modifier alerts the plan that it is not an error and will allow the claim to continue with normal processing (Anthem Blue Cross and Blue Shield Medicaid).

For researchers looking to improve healthcare for the LGBTQ community, the data is rather limited. With the implementation of ICD-10, the specificity of data has increased, but with only three full years of claims data the ability to analyze in-depth is just beginning. In February 2018, researchers at Johns Hopkins published findings in JAMA Surgery regarding gender affirming interventions ranging from hormone therapy to gender reassignment. Using the National Inpatient Sample (NIS) on Healthcare Cost and Utilization Project (HCUP) website, the researchers examined the increasing trend in gender-affirming procedures and coverage of these procedures by Medicare, Medicaid, and private insurance. While this research provides great information related to future trends, the downside is that the data was based on ICD-9-CM.

Coding professionals need to be confident in their understanding of how to accurately assign diagnostic and procedure codes for those patients receiving gender-affirming procedures in order for research be to accurate and reliable. The Medicare Claims Processing Manual’s Chapter 32: Billing Requirements for Special Services should be referenced for guidance. For hospital coders, this includes understanding what procedures are inherent to the creation of a root operation as it pertains to gender reassignment and knowing what additional procedure codes should be assigned. For example, in female-to-male reassignment, codes should be assigned for the harvesting of any graft material used for the phalloplasty in addition to the creation procedure. The hospital billing department needs to be aware of the need for condition code 45 to be placed on any inpatient or outpatient claim when there is a sex/diagnosis or sex/procedure edit in order to alert the payer that the edit is not a conflict and should be bypassed.

Accurate code assignment is also important when coding for the physician. When assigning CPT codes, the individual billing provider is required to append modifier KX on any line item procedure that is gender-specific—allowing the claim to be processed normally.

In order to best serve the LGBTQ community, health information professionals should continue to partner with others to understand and communicate the importance of collecting, processing, safeguarding, and managing data such as sexual orientation and gender identity. This can start by understanding federal and state regulations, providing sensitivity and inclusion training, advocating for additional EHR fields, and creating organizational policies and procedures.


A special acknowledgement to the AHIMA LGBTQ Volunteer Workgroup members who contributed to the content development of this article.

  1. “More Inclusive Care for Transgender Patients Using Epic.” Epic Outcomes. December 12, 2017.
  2. Woebkenberg, Jamie. “SO/GI Data: Up Close with The Fenway Institute” at AHIMA19: Health Data and Information Conference, Chicago, IL, September, 17, 2019.
  3. Ibid.
  4. Fitzsimmons, Tim. “N.J. to become fourth state with gender-neutral birth certificate option.” January 30, 2019. NBC News.
  5. The Centers for Medicare and Medicaid Services. Instructions Regarding the Processing of Inpatient Claims for Gender/Procedure Conflict. April 29, 2010.

Butler-Henderson, Kerryn et al. “Using Population Health, Inclusive HIM Practices to Better Treat LGBTQ Patients.” Journal of AHIMA 89, no. 8 (September 2018): 24–29.


Julie Pursley Dooling ( is a director of HIM practice excellence at AHIMA. Jamie Woebkenberg ( is senior director, HIMS operations at Banner Health. Stevan Hidalgo ( is the operations manager, HIM, at Children’s Hospital Colorado.

Continuing Education Quiz

Review quiz questions and take the quiz based on this article online at

  • Quiz ID: Q2039101
  • Expiration Date: January 1, 2021
  • HIM Domain Area: Clinical Data Management
  • Article: “How Inclusive Is Your Data?”


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Integrity: Advancing the knowledgeable, contextual, secure, and appropriate creation and use of health data, leading industry conversations on innovative ways to ensure integrity


Explore More

The American Medical Association (AMA) recently issued a statement calling for inclusivity in electronic health records (EHRs) for transgender patients, an issue that AHIMA fully supports. In this episode of AHIMA’s HI Pitch podcast, host Dan Kelly speaks with Julie Pursley Dooling, MSHI, RHIA, CHDA, FAHIMA, director of HIM practice excellence at AHIMA, about the AMA statement, sexual orientation and gender identity data, the work done by AHIMA’s LGBTQ Volunteer Workgroup, and the January Journal of AHIMA “How Inclusive is Your Data?”