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U.S. Department of Health and Human Services
Indian Health Manual

Data Capture of Sexual Orientation and Gender Identity Information

DEPARTMENT OF HEALTH AND HUMAN SERVICES
Indian Health Service Rockville, Maryland 20857

INDIAN HEALTH SERVICE CIRCULAR NO. 23-02

Refer to: ORAP

DATA CAPTURE OF SEXUAL ORIENTATION AND GENDER IDENTITY INFORMATION

Sec.

  1. Purpose
  2. Scope
  3. Background
  4. Authorities
  5. Policy
  6. Definitions
  7. Responsibilities
  8. Supersedure
  9. Effective Date
  1. PURPOSE.  The purpose of this circular is to provide a standard to capture structured data for Sexual Orientation and Gender Identity (SO/GI) in the data fields of the patient’s health record.  Furthermore, SO/GI data collected and entered into the electronic health record (EHR) must be obtained in a manner that is culturally competent and affirming to patients that identify as Two-Spirit, Lesbian, Gay, Bisexual, Transgender, Queer and Plus (2SLGBTQ+)1.
  2. SCOPE.  In accordance with 42 C.F.R. § 136.3, this Circular contains operating procedures to assist officers and employees in carrying out their responsibilities, and are not regulations establishing program requirements, which are binding upon members of the general public.  Tribal health programs are not required to abide by this Circular.  Accordingly, the following guidance shall apply to all federally operated service units that provide direct patient care or provide Purchased/Referred Care (PRC) services.

    This guidance is intended to assist Patient Registration, Business Office, Health Information Management (HIM), PRC and other designated staff to maintain the legal health records in accordance with State and Federal law.  The legal requirements for changing names and   demographic information differ from state to state, and this Circular is not intended to address unique state law requirements. Service Units should work with the Department of   Health and Human Services, Office of the General Counsel (OGC) to develop more detailed local policies that comply with this Circular and  applicable law.

  3. BACKGROUND.  The Centers for Medicare and Medicaid Services (CMS), and the Office of the National Coordinator for Health Information Technology (ONC-HIT) require EHRs to be a certified system by meeting the Promoting Interoperability (previously known as Meaningful Use) standards.  An EHR is required to have the ability to capture SO/GI data. 

    The Uniform Data System (UDS) is an annual reporting system that provides standardized information about the performance and operation of health centers delivering health care services to underserved communities and vulnerable populations.  The UDS data on patient characteristics and clinical conditions are used to evaluate and improve health center performance, ensure compliance with legislative mandates, and identify trends in health centers’ impact on expanding access, addressing health disparities, improving quality, and reducing health care costs.  The UDS reporting includes SO/GI data elements.

    In addition, collecting this data in EHRs is essential to providing high-quality, patient-centered care.  An opportunity for 2SLGBTQ+ people to share information about their SO/GI in a welcoming and patient-centered environment opens the door to a more trusting patient-provider relationship and improved health outcomes for our patients.

  4. AUTHORITIES.
    1. 2015 Edition health IT certification demographic criteria, 45 C.F.R. § 315(a)(5)
      https://www.federalregister.gov/documents/2015/10/16/2015-25597/2015-edition-base Exit Disclaimer: You Are Leaving www.ihs.gov 
    2. CMS Medicare Requirement, §482.13(h) Condition of Participation: Patient's Rights
      https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-G/part-482 Exit Disclaimer: You Are Leaving www.ihs.gov 
    3. Vocabulary standards for representing electronic health information, 45 C.F.R. § 170.207(o)
      https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-D/part-170/subpart-B/section-170.207 Exit Disclaimer: You Are Leaving www.ihs.gov 
  5. POLICY. It is the policy of the IHS that:
    1. The EHR and the paper record combined is the legal health record that represents the treatment of a patient.
    2. Staff will continue to ensure that patients’ rights to privacy are protected by all who have access to patient information.
    3. Patients will be allowed to voluntarily provide SO/GI related information for capture in their health records.  This includes Legal Sex, Gender Identity, Preferred Name, Pronouns, and Sexual Orientation.
    4. The information will be collected through an identified local process that may include the use of the Intake Form; see exhibit A – example Intake Form.
    5. Patients may decline to provide SO/GI information.
    6. Patients will be asked for any updates to the SO/GI information per the frequency defined at the local level.
    7. Legal Name may be changed in the health record when a patient provides documentation that their name has been legally changed.
    8. Legal Sex may be changed in the health record when a patient provides documentation that their legal sex has been legally changed.
    9. The same Health Record Number will be kept when a legal name or legal sex is changed.
  6. RESPONSIBILITIES.
    1. Facility Chief Executive Officer. The Chief Executive Officer (CEO) or designee has the responsibility to oversee the facility process for capturing SO/GI information.  The CEO should appoint a dedicated team comprised of department champions to define and implement the process of collecting SO/GI information in a safe, secure, and private manner.
    2. Clinical Staff. Staff involved in clinical functions, including medical, behavioral health, dental, and ancillary department staff should be familiar with the facility process for collecting, recording, and communicating SO/GI data.
    3. Patient Registration Staff. The IHS staff who perform Patient Registration duties will update the information within the Patient Registration application.  Registration Staff must use a locally defined method of communicating patient information with clinical staff that is consistent with all applicable privacy laws.
    4. Health Information Management. Health Information Management is the legal custodian of the Legal Health Record and oversees the operational functions related to data entries, state-required authentication, security, and record retention.
    5. All IHS Employees. All IHS Employees are responsible for:
      1. Ensuring they comply with privacy laws, including the Health Insurance Portability and Accountability Act, Privacy Rules, Health Information Technology for Economic and Clinical Health Act, the  Privacy Act, and the Substance Abuse Confidentiality Regulations at 42 C.F.R. Part 2.
      2. Ensuring patients are treated with respect, full recognition of their personal dignity, individuality, and need for privacy.
  7. PROCEDURES.
    1. Implementation. In order to define the local SO/GI data collection process, leadership should designate a local team with at least one member being an executive staff (CEO, Chief Financial Officer, etc.). The team should include leadership from all clinical, pharmacy, ancillary, and administrative staff, such as HIM, Business Office (patient registration, patient benefits coordinator, and billing), Informaticist/Clinical Applications Coordinator, and PRC.  When determining the local process, particular emphasis should surround patient rights and patient confidentiality, and interdepartmental communication.
    2. Orientation. Leadership should arrange for orientation to entire facility staff on SO/GI data collection. Resources are available at www.ihs.gov/lgbt.
    3. Training. Leadership should ensure training is provided to all departmental staff who have patient contact or access to patient information. Developing competencies will demonstrate understanding and should be created and implemented by each impacted department.
    4. Communication. The current system allows Patient Registration to enter SO/GI data in the demographics section, however, this entry will not automatically appear in other parts of the Resource and Patient Management System (RPMS) until further analysis and development occur. The facility must adopt a process for communicating SO/GI data from Patient Registration to other departments. Some communication examples are listed below, but require discussion for each facility for implications on the legal health record, business process, and locally defined workflow.
      1. Assigning “view only” keys of Practice Management Suite registration tab to clinical staff.
      2. Creating a Patient Record Flag.
      3. Using the posting Clinical Warnings Advance Directive button with a note.
      4. Creating a Data Object.
      5. Using the Integrated Problem List.
    5. Use of the Intake Form. The following fields are available for data capture in RPMS, and facilities are recommended to adopt an Intake Form (exhibit A) that contains these data elements:
      1. Birth Sex
      2. Legal Sex (optional field)
      3. Gender Identity (optional field)
      4. Preferred Name (optional field)
      5. Pronouns (optional field)
      6. Sexual Orientation (optional field)
    6. Treatment of Source Document. Destroy the document immediately after information from the form at the point of care has been successfully captured in RPMS.
    7. Review and Quality Improvement.  As part of the quality improvement process, a facility should continue to enhance the SO/GI data collection process to fit the facility's needs and incorporate any system enhancements.  A process review should occur at least annually to implement identified streamlined efficiencies.
  8. SUPERSEDURE. None.
  9. EFFECTIVE DATE.  This circular becomes effective on the date of signature.
Roselyn Tso
Director
Indian Health Service

Circular Exhibit A – Example Intake Form

Distribution IHS-wide
Date 6/16/2023