Summary of Consensus-based Recommendations for Voluntary Consideration 

July 30, 2024

*This meeting is being recorded and will a replay will be publicly posted. . 

Modernizing Demographic Data Standards to Advance Health Equity

Meet the Program Partner Organizations

ABOUT CIVITAS

Civitas Networks for Health is a national collaborative comprised of over 170 member organizations working to use health information exchange, health data, and multi-stakeholder, cross-sector approaches to improve health.

Civitas educates, promotes, and influences both the private sector and policymakers on matters of interoperability, quality, coordination, health equity, and cost-effectiveness of health care. The network supports local health innovators by amplifying their voices at the national level and increasing the exchange of valuable resources, tools, and ideas.

Civitas Networks for Health

@civitas4health

Health Level Seven®   International (HL7®) 

• Not-for-profit, ANSI-accredited standards development organization (SDO).
• Dedicated to providing a comprehensive framework and related standards for the exchange, integration, sharing, and retrieval of electronic health information that supports clinical practice and the management, delivery and evaluation of health services.

Vision

• A world in which everyone can securely access and use the right health data when and where they need it.

Mission

• To provide standards that empower global health data interoperability.

Education on Demand: HL7® training Straight from the Source

Overview, Rationale, and Goals of This Work 

Challenges with Demographic Data Collection

Inaccurate, Incomplete Data

• Data not inclusive of how people identify
• Leads to large numbers of missing, “Other,” or “Unknown” data

Significant Resources Invested

• Multiple standards exist but are not aligned

Lack of Interoperable Data

• Leads to Patient Burden
• Leads to Mistrust

What is the DEMo Initiative? 

The Demographic Data Element Modernization (DEMo) Initiative is a multi-phased program that is being implemented through a partnership between AHIP, Civitas Networks for Health (Civitas), and Health Level 7 International (HL7). 

The program aims to improve upon existing demographic data standards so that health care organizations can better identify disparities and inform culturally responsive care. 

Mission: Advance Health Equity through Better Data

Collect Data 

Share Data

Measure

Analyze

Best Practices

Inform Care

Act

How?

Why Us?

Patients

Providers

Payers

Community Based Organizations

Standards Development Organizations

Public Health

Academia

Hospitals

Vendors

Government

Accrediting Organizations

Healthcare Ecosystem

Pharmacies

Manufacturers

DEMo Initiative

Mission: 

• Advance Health Equity through Better Demographic Data

Goal:

• Modernize and enhance national demographic data content and exchange standards so that they are culturally sensitive and sufficiently granular that allow for alignment across stakeholders.

Objective:

• Facilitate the collection of accurate, complete, comparable, actionable, and interoperable data that supports better outcomes, fewer disparities, improved patient trust, and enhanced operational efficiency. 

How We'll Get There:

1. Align Data Elements

• Race and Ethnicity 
• Sexual Orientation & Gender 
• Disability Status 
• Language Preference 
• Military Experience 
• Spirituality 

*Cognitive Testing

2. Build Consensus on  Tech Standards 

• Utilize HL7 standards development process.
• Explore development of FHIR Questionnaire and HL7 Implementation Guides (IGs).

3. Pilot

• Pilot test, harvest lessons learned, and develop materials for putting standards into practice. 

Phase 1: 

Align & 

Inform

Phase 2: 

Scope 

& Build Consensus

Phase 3: Implement 

& Integrate 

Current Status

Cognitive Testing

https://www.how-paid-research-works.com/what-are-paid-focus-groups

• Partnering with the Patient Advocate Foundation to test face validity
• Ensure individuals:
• Understand the questions 
• What is being asked of them
• Feel comfortable answering the questions
• Believe response choices offered allow them to appropriately identify themselves
• Ensure staff administering questions:
• Understand the questions
• Feel comfortable asking the questions
• Complete by Fall 2024
• Potential minor revisions may result from this testing

AHIP's Work to Date as the Foundation for the DEMo Initiative 

AHIP Health Equity Workgroup's Approach to Enhance Demographic Data

Race and Ethnicity

• Higher-Level & Granular Options

Sexual Orientation and Gender

• Pronouns
• Relationship Status

Language Preference (Reading & Speaking)

Disability Status

• Vision
• Hearing
• Cognitive
• Communication
• Ambulatory
• Self-Care
• Other Functional

Military Experience

Spiritual Beliefs

• Coding Crosswalk (with LOINC, SNOMED, ICD-10) and Data Documentation

• AHIP Health Equity Workgroup Goals:  

• Align with national questionnaires if/when possible but improve upon them when necessary​
• Standardize at high-level while allowing for local customization and granularity:   What data is needed at high-level vs more local level?​
• Aim for actionability while minimizing data burden: Why are we asking for this data?

Findings from the National Virtual Focus Groups

Race and Ethnicity

Introduction and Definitions for Race and Ethnicity 

• Thank you for taking the time to answer these questions. The following questions will ask you to identify your race and/or ethnicity. Race is one way our society groups people together. Categories of race have been made up over time. These categories are often based on things we can see, like a person’s skin color, but do not indicate real biological differences. Ethnicity is based on how we identify with other people when we share certain experiences or backgrounds with them. This may include things like language, history, religion, or culture. There is also an optional question that will ask you about your specific race and/or ethnicity. We recognize that these are personal questions and there is an option to not respond. Your care will NOT be affected in any way should you choose not to respond. 

Version 2: Race and Ethnicity

Version 2: Race and Ethnicity at More Granular-Level

Preferred Language

Introduction and Definitions for Language 

• Thank you for taking the time to answer these questions. To ensure we are doing our best to communicate in a way that is understandable, and/or connect you to available translation services, the following questions will ask you to identify which language or languages you feel most comfortable speaking, reading, and writing in when it comes to your health care. The languages listed as response options are mostly based on a 2019 American Community Survey Report that identified more common languages used in the United States, other than English. If you do not see your preferred language, there is a space to write in a response. This question is meant to inform and improve our service responses now, or in the future.

Version 2: Language Preference – Speaking

Version 2: Language Preference – Reading and Writing

Version 2: Language Preference – Setting Specifics

In-Person at Care Setting:

• If an interpreter in your preferred language was available right now, would you choose to use one for your health care visit?  
• Yes
• No
• I do not know
• I choose not to respond
• Are you comfortable using an interpreter if they are only available through: 
• Telephone:  Yes or No
• Video: Yes or No
• In-person: Yes or No
• I do not know
• I choose not to respond

Outreach Preferences: 

• How would you prefer to be contacted with information related to your health care?  Check all that apply.
• Phone Call
• Text Message
• Email
• Mailed Letter
• I do not know
• I choose not to respond

Sexual Orientation, Sex, Gender

Introduction and Definitions for Sexual Orientation, Sex, and Gender

• Thank you for taking the time to answer these questions. The following questions will ask you how you think of yourself regarding your sexual orientation, sex, and gender. Sexual orientation means which gender you have an emotional, romantic or sexual attraction to. Sex means the sex you were assigned at birth by a doctor or midwife, based on external body parts. Gender is one's own sense of self and their gender, whether that is man, woman, neither or both. Your gender may differ from your sex assigned at birth. We recognize that these are personal questions and responses may change overtime. Your care will NOT be affected in any way should you choose not to respond. 

Version 2: Sexual Orientation

Version 2: Sex and Gender

Pronouns 

Introduction and Definitions for Pronouns

• Thank you for taking the time to answer these questions. To make sure we are communicating with you respectfully, the following question will ask you to choose or write-in your pronouns. Pronouns are how you identify yourself apart from your name and how someone refers to you in conversation. We recognize that this is a personal question, and responses may change overtime. This is an optional question, and your care will NOT be affected in any way should you choose not to respond. 

Version 2 Optional: Pronouns

Relationship Status 

Introduction and Definitions for Relationship Status

• Thank you for taking the time to answer these questions. To make sure we have the information we need to identify potential health insurance eligibility and are considering lifestyle factors that can impact your health, the following question will ask you to identify your relationship status. This can include legal agreements with another person (marriage or a registered partnership) or relationships that are not legally recognized (in a committed relationship or dating). We recognize that this is a personal question, and responses may change overtime. This is an optional question, and your care will NOT be affected in any way should you choose not to respond. 

Version 2 Optional: Relationship Status

Disability Status

Introduction and Definitions for Disability Status

• Thank you for taking the time to complete these questions. The following question will ask if you have difficulty doing certain things or completing certain tasks because of a physical or mental health condition that greatly limits your daily activities. This question will help to inform how your care team and others care for you and communicate with you about your care. It will also ensure that you receive the care and services you want and need, now or in the future. We recognize that this is a personal question and there is an option to not respond. Your care will NOT be affected in any way should you choose not to respond. 

Version 2: Disability Status

Military Experience

Introduction and Definitions for Military Experience

• Thank you for taking the time to complete these questions. The following questions will ask you about your experience, or an immediate family member's experience, serving in the armed forces of the United States. The armed forces of the United States include the Army, Navy, Marine Corps, Air Force, Coast Guard, and Space Force. There is also an optional question on your experience in the armed forces of another country other than the United States. This question is optional and will NOT affect your care should you choose not to answer. This information is being collected to identify potential eligibility for U.S. Veteran benefits and referrals, and to ensure you are receiving the treatment and services you need and want, now or in the future.  

Version 2: U.S. Veteran Status and Other Military Experience

Version 2: U.S. Veteran Status and Other Military Experience

Spiritual Beliefs

Introduction and Definitions for Spirituality 

• Thank you for taking the time to answer these questions. To make sure we are providing you with care that is appropriate and accommodating to your lifestyle and values, the following questions will ask you about any beliefs we should know about before we provide care. These beliefs can include religious, health, cultural or any others you feel are important to your care experience. There is also an optional question that will ask you to identify a specific religion, spirituality, or belief system you follow. These questions are meant to inform any services we provide you now or in the future. We recognize that these are personal questions and there is an option to not respond. Your care will NOT be affected in any way should you choose not to respond. 

Version 2 Optional: Other Care Considerations

Which of the following should we know about you before we provide care? Select all that apply. 

• Health beliefs
• Cultural preferences
• Religious beliefs
• Spiritual beliefs
• Specific diet followed (e.g., Halal, Kosher, Pescatarian, Vegetarian, Vegan)
• Caregiving status
• Other (please write): 
• I choose not to respond at this time

https://prapare.org/ 

Version 2 Optional: Religion and/or Spiritual Beliefs

Adapted from 2014 Religious Landscape Survey: https://assets.pewresearch.org/wp-content/uploads/sites/11/2018/06/12094008/Appendix-D.pdf?ut_source=content_center&ut_source2=how-to-ask-about-religion-in-your-surveys&ut_source3=inline 

Next Steps

Phase 2 Building Consensus on Technical Standards

• Cognitive testing of questions and response choices with the Patient Advocate Foundation.​
• Utilize HL7 standards development and consensus building process.​
• Explore the development and publication of new FHIR Questionnaire representing the recommended data elements developed in Phase 1.​
• Explore creation of corresponding HL7 Implementation Guides (IGs).

HL7 Project Proposal Workflow

HL7 Project Scope Statement Flow

Thank You!

For more information, please visit:

www.civitasforhealth.org/demographic-data-standards. 

Questions? Please feel free to reach out to mvalu@civitasforhealth.org.

Or, join us at the Civitas Annual Conference on October 15-17, 2024, in Detroit, MI. Learn more at www.civitasforhealth.org.