Data Element
Submitted By: A. Taylor / ONC
Data Element Information
Data Element Description A coded representation of a patient's stated sexual orientation.
Use Case Description(s)
Use Case Description A user can record a patient’s sexual orientation according to HL7 Version 3 and SNOMED CT® codes. The user must be able to record whether the patient declined to specify sexual orientation. Note that while sexual orientation is included in this 2015 Edition “demographics” certification criterion and the 2015 Edition Base EHR definition, it is not included in the Common Clinical Data Set definition. This means that sexual orientation is not required to be exchanged using certain standards, only that systems enable a user to record sexual orientation. [see also 80 FR 62619]

We provide the following OID to assist developers in the proper identification and exchange of health information coded to certain vocabulary standards.
SNOMED CT® code system OID: 2.16.840.1.113883.6.96 [see also 80 FR 62612]
Health IT Modules can present for certification to a more recent version of the U.S. Edition of SNOMED CT® than the September 2015 version. [see also 80 FR 62612]
Estimate the breadth of applicability of the use case(s) for this data element Users of the 572 certified health IT products, out of 901 total products certified to ONC's 2015 Edition, that successfully tested to the 170.315(a)(5) demographics
certification criterion has the ability to record, change, and access gender identity data within these products.
Link to use case project page https://www.healthit.gov/test-method/demographics
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) https://www.healthit.gov/isa/representing-patient-identified-sexual-orientation
Additional Specifications N/A
Current Use This data element has been used at scale between multiple different production environments to support the majority of anticipated stakeholders
Extent of exchange N/A
Potential Challenges
Restrictions on Standardization (e.g. proprietary code) While it is required under the 2015 Edition 170.315(a)(5) demographics certification criterion to be able to record, change, and access sexual orientation data, it is not required for exchange. One restriction may be the ability to restrict exchange based on patient consent by element.
Restrictions on Use (e.g. licensing, user fees) None
Privacy and Security Concerns None
Estimate of Overall Burden Already implemented for record, change, and access, but not for exchange.

Comment

Submitted by dataequitycoalition on

Data Equity Coalition: Sexual Orientation Data Element USCDI V7

Recommendation: The Data Equity Coalition recommends that ASTP reinstate the sexual orientation and gender identity (SOGI) data elements that were removed from USCDI version 6. The data elements should align with USCDI version 3, with sexual orientation data elements utilizing SNOMED International, Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT®) U.S. Edition, March 2022 Release. The data elements for gender identity should align with SNOMED CT® and HL7 Version 3 Standard, Value Sets for AdministrativeGender and NullFlavor. 

Rationale: Data elements for SOGI are integral to collecting health data and health information exchange. Collecting SOGI data is critical for understanding the lived experiences and health disparities that impact different populations4 . Without data elements for SOGI, it becomes more challenging to measure population health and the effectiveness of interventions for different populations accurately and meaningfully, addressing their unique, intersectional needs. Reinstating the SOGI data elements in the USCDI will help HHS agencies and the broader health care ecosystem in understanding the health and well-being challenges people face related to their sexual orientation and gender identity.

Submitted by tcarr_sonoma on

Additional values in the valueset Comments: 

Current sexual orientation values in USCDI v2 has ‘Something else, please describe’ which represents different sexual orientation categories that may have specific and different needs when compared to another distinct group with different sexual orientation. For example, as per USCDI v2, person with sexual orientation as ‘pansexual’ falls in the same group as person with e.g. ‘asexual’ as their orientation. These two groups may have completely different physical, social, emotional health needs which goes unnoticed in the current context of health equity. The sexual orientation valueset being proposed is as follows:

  • Straight or Heterosexual
  • Gay, Lesbian or Homosexual
  • Bisexual
  • Pansexual*
  • Queer*
  • Asexual*
  • Two-spirit*
  • Questioning/not sure*
  • Choose not to disclose
  • Not listed, please describe

  *New values being proposed

Submitted by RUy on

Collecting SO/GI data is…

Collecting SO/GI data is essential to providing high-quality, patient-centered care for transgender people. ONC has provided good leadership on the standardization of this content in USCDIv2. FQHCs are required to collect these data for all their patients and report them to HRSA so these data are well established and are imperative to the patient-centered provision of care.

  • SO/GI data can be collected in several ways: 
  1. Information can be obtained through patient portals and transmitted to an individual’s EHR. This approach is attractive because it puts the patient in charge of defining their own identity and needs.
  2. Questions can be included on registration forms for all patients as part of the demographic section along with information about race, ethnicity, and date of birth. 
  3. Providers and their care team can ask questions during the patient visit, for instance, as part of a social or sexual-history discussion. 

To address the lack of SO/GI data in health systems, the Department of Health and Human Services’ (HHS’s) Healthy People 2020 included an objective to “increase the number of states, territories, and the District of Columbia that include questions that identify sexual orientation and gender identity on state level surveys or data systems” to improve “the health, safety, and well-being of lesbian, gay, bisexual, and transgender (LGBT) individuals.” Increasing the number of population-based data systems that collect standardized data on (or for) lesbian, gay and bisexual populations and on (or for) transgender populations and expanding the availability of sexual orientation/gender identity (SO/GI) statistics have also been priorities for other federal agencies.

NACHC believes sexual orientation is a core component of many patients’ identities. However, it is also associated with serious health inequity and health disparities. Furthermore, it is clinically relevant to a number of domains of sexual health, trauma and interpersonal violence, substance abuse and mental health risk factors. Michigan students identifying as lesbian, gay, or bisexual reported higher rates than their peers for measures of bullying, missing school due to fear for their safety, and were more than three times as likely to report seriously considering suicide in the past year.

We strongly support the requirement for sexual orientation data to be captured in a standardized way in EHRs to support patients’ identities, reduce health disparities and facilitate effective clinical risk that may be modified by sexual orientation.

2022-04-30 NACHC USCDIv3 Letter of Support_10.pdf

Submitted by nedragarrett_CDC on

CDC's comment on behalf of ASTHO (WA DOH)


Subject: Additional values in the valueset

Comments: Current sexual orientation values in USCDI v2 has ‘Something else, please describe’ which represents different sexual orientation categories that may have specific and different needs when compared to another distinct group with different sexual orientation. For example, as per USCDI v2, person with sexual orientation as ‘pansexual’ falls in the same group as person with e.g. ‘asexual’ as their orientation. These two groups may have completely different physical, social, emotional health needs which goes unnoticed in the current context of health equity.
The sexual orientation valueset being proposed is as follows:

  • Straight or Heterosexual
  • Gay, Lesbian or Homosexual
  • Bisexual
  • Pansexual*
  • Queer*
  • Asexual*
  • Two-spirit*
  • Questioning/not sure*
  • Choose not to disclose
  • Not listed, please describe

 

*New values being proposed

Submitted by nedragarrett_CDC on

CDC's Consolidated Comment

  • Addressing health equity tasks through the USCDI in a scope of the SOGI, the USCDI should contain 5 data elements (Gender Identity, Sex assigned at birth, Sexual Orientation, Sex for Clinical Use Note and Patient Pronoun). The last two mentioned data elements were not included into the v.3. We recommend including the Sex for Clinical Use Note (within the Clinical Notes data class) and Patient Pronoun (within the Patient Demographic) into the next, the USCDI v.4 version.
  • We are proposing adding to the USCDI v.3 a LOINC code for the question as the following: 76690-7, Sexual orientation.

CSTE Comment:

  • CSTE recommends that strong consideration be given to employing the sexual orientation value set put forward by the HL7 gender harmony project - which include lesbian, gay or homosexual; straight or heterosexual; bisexual; asexual; exploring or questioning sexual orientation; something not listed (specify); choose not to disclose; and unknown.

Submitted by lhiatt on

Additional Values in value set, seconded

I agree with the comment by Ravi.kafle; It is better to expand options to accurately capture and destigmatize other sexualities. The new values being proposed by them appear a marked improvement.

Submitted by ravi.kafle@doh… on

Additional values in the value set

Current sexual orientation values in USCDI v2 has ‘Something else, please describe’ which represents different sexual orientation categories that may have specific and different needs when compared to another distinct group with different sexual orientation. For example, as per USCDI v2, person with sexual orientation as ‘pansexual’ falls in the same group as person with e.g. ‘asexual’ as their orientation. These two groups may have completely different physical, social, emotional health needs which goes unnoticed in the current context of health equity.

The sexual orientation valueset being proposed is as follows:

  • Straight or Heterosexual
  • Gay, Lesbian or Homosexual
  • Bisexual
  • Pansexual*
  • Queer*
  • Asexual*
  • Two-spirit*
  • Questioning/not sure*
  • Choose not to disclose
  • Not listed, please describe

 

*=New values being proposed

Submitted by zbarber on

Sexual Orientation Description

The NY eHealth Collaborative (NYeC) supports including sexual orientation in the USCDI v2 due to its widespread use and clinical value for LGBTQIA individuals. We suggest revising the element description to refer to the Lamda Legal definition: "People’s sexual attraction to same or different-sex people."

Log in or register to post comments

FormGuide

Help

1. Optional: Background Text / Cover Letter

The "Optional Background Text / Cover Letter" field provides space for additional context or introductory information related to your comment.

If you wish to provide context, explanation, or an introduction to your comment, enter this information in the field labeled "Optional Background Text / Cover Letter." This is entirely optional and is most useful when submitting multiple related comments or when additional background would help reviewers understand your feedback.

If you are only commenting on a single data class or element, you may leave this field blank.

2. Select the Data Class

To specify which data class your comment addresses:

  1. In the "Data Class" drop-down menu, select the appropriate data class you want to comment on.
  2. If you are providing a general comment that is not specific to a data element, select "General" from the options. Comments with this designation will be displayed on the USCDI landing page.
  3. Note that the Data Class field will automatically populate based on your current location in the platform:
    1. If you are on a data class page, the field will be set to that specific data class
    2. If you are on a data element page, the corresponding data class will be pre-selected
       

3. Select the Data Element

To specify which data element your comment addresses:

  1. In the "Data Element" drop-down menu, select the specific data element you want to comment on.
  2. The drop-down menu will display only the elements available under the data class you selected in the previous step.
  3. You can use the search function within the drop-down to quickly locate a specific data element.
  4. If you are commenting on the data class itself rather than a specific element, you may leave this field blank.

Note: Comments on a specific data element will appear on the respective data element page, while comments on a data class (without a specific element selected) will appear on the landing page for that data class.
 

Data Class and Data Element

Fig 1 The "Data Class" and "Data Element" dropdown menus allow users to specify the exact content they wish to comment on.

4. Optional: Propose New Data Class or Element

If you cannot find the appropriate data class or element for your comment:

  1. Instead of clicking the "Comment On An Existing Data Class Or Element" button, click the adjacent button labeled "Propose a New Data Class or Data Element."
  2. This will redirect you to the ONDEC (ONC New Data Element and Class) Submission System.
  3. In the ONDEC system, follow the provided instructions to submit your proposal for a new data class or element.
  4. Once your proposal is submitted through ONDEC, it will be reviewed separately from the commenting process.
Propose New Data Class or Element

Fig 2 The "Propose a New Data Class or Data Element" button redirects users to the ONDEC Submission System for proposing new data elements not currently available in the system.

5. Complete the Comment Form

Fill out the required fields in the comment form:

Subject: Enter a brief, descriptive title that summarizes your comment. This helps reviewers quickly understand the nature of your feedback.

Comment: In this field, provide the full details of your comment or feedback. Be as clear and specific as possible about your suggestions, concerns, or observations. Include any relevant details that support your position.

6. Optional: Add Additional Comments

If you need to comment on multiple data classes or elements:

  1. After completing your first comment, click the link labeled "Comment on another data element" at the bottom of the form.
  2. A new comment section will appear, allowing you to enter details for your additional comment.
  3. For each additional comment, you must select the appropriate data class and data element from the drop-down menus.
  4. Complete the Subject and Comment fields for your additional comment.
  5. Repeat this process for each additional comment you wish to submit.

Fig 3 The "Comment on another data element" link enables users to create multiple comments addressing different elements within a single submission.

7. Optional: Upload Supporting Files

The platform allows you to upload supporting documentation to enhance your comment:

  • Locate the "File Upload" section at the bottom of the comment form.
  • Click to upload any files (such as PDFs or documents) that provide additional context, evidence, or clarification for your comment.

Important: If you have already entered your comments using the form fields, there is no need to upload duplicate content in PDF format. The file upload feature is intended for supplementary materials only. Please avoid uploading files that contain the same information already provided in your comment text.

Upload Supporting Files

Fig 4 The "File Upload" section permits users to attach supporting documentation that supplements their written comments.

8. Optional: Save and Exit

If you need to pause your work and return to complete your comment later:

  1. Click the "Save and Exit" button at the bottom of the form.
  2. Your comment will be saved as a draft that you can access and complete later.
  3. When you return to the platform, you will see a red triangle with an exclamation mark next to the “Return to saved Comment” button, indicating that you have saved comments in draft status.
  4. Click this button to continue working on your draft.
  5. You will be taken to a review page where you can:
    1. Select "Submit Comment" to officially submit your feedback.
    2. Click "Edit" to return to the comment form and make changes
    3. Select "Discard Draft" to delete the saved draft and start fresh

Fig 5 A red triangle with exclamation mark indicator appears next to the “Return to saved Comment” button when draft comments are saved in the system.

9. Review and Submit

Once you have completed your comment:

  1. Click the "Review and Submit" button at the bottom of the form.
  2. This will take you to a review screen displaying your comment(s) in full.
  3. Review all information for accuracy and completeness.
  4. On this review screen, you have three options: 
    1. Click "Submit Comment" to officially submit your feedback
    2. Click "Edit" to return to the comment form and make changes
    3. Click "Discard Draft" to delete the comment and start fresh
  5. The review screen also includes a "Print" button that allows you to create a printed copy of your comments for your records. 
  6. If you choose to submit, your comment will be recorded in the system and made available for review by the appropriate stakeholders.
Review and Submit

Fig 6 The review screen allows users to verify comment content and make any necessary modifications before final submission.

USCDI Comments

Close

Add a New Comment

Review comment and Submit

Edit
Comment #1