This multi-phased initiative — led by Civitas Networks for Health® (Civitas), Health Level Seven® International (HL7®), and America’s Health Insurance Plans (AHIP) — seeks to modernize and strengthen national demographic data content and exchange standards so health care organizations can better identify disparities and support culturally responsive care. The program focuses on refining and expanding demographic questions and response choices first proposed by AHIP’s Health Equity Workgroup through a multi-year, stakeholder-driven process.
The objective of the initial phase was to improve existing and develop new content standards across ten demographic domains (race, ethnicity, sexual orientation, sex, gender, relationship status, pronouns, military experience, disability status, preferred language, and spiritual beliefs). To do this, the program convened national virtual focus groups largely organized by demographic data domains. Participants of the national virtual focus groups were invited to share their thoughts, comments, feedback, and overall perspectives on the ten demographic domains. Final recommendations from this phase are presented in the Phase 1 Report.
A key recommendation from those stakeholders was to conduct cognitive testing of the revised questions and response options prior to HL7 standardization. In response, the program engaged the Patient Advocate Foundation’s Patient Insight Institute to assess face validity, reliability, and understandability of the proposed content. Minor revisions were made based on those findings, and an updated report detailing the changes is expected by mid‑2026.
Subsequent phases will follow HL7’s established consensus-building processes to translate the refined data elements into American National Standards Institute (ANSI)-accredited, FHIR®-based national standards. Work is currently underway with the HL7 Cross-Group Projects Work Group as the sponsoring HL7 workgroup. Once a Project Scope Statement (PSS) is submitted defining project goals, justification, example use cases, and stakeholders, the sponsoring workgroup will review and once approved, the project will proceed through the HL7 ballot cycle.
AHIP is the national association whose members provide health care coverage, services, and solutions to hundreds of millions of Americans every day. AHIP is committed to market-based solutions and public-private partnerships that make health care better and coverage more affordable and accessible for everyone. Visit www.ahip.org to learn more.
As a national, mission-driven nonprofit organization, Civitas Networks for Health brings together over 170 members with expertise in health improvement, health information exchange, and interoperability. Members include health information exchanges (HIEs), regional health improvement collaboratives (RHICs), all payer claims databases (APCDs), and quality improvement organizations (QIOs) that are bringing together health care providers, purchasers, payers, and patients to advance data-driven progress. Visit www.civitasforhealth.org to learn more.
Founded in 1987, Health Level Seven® International (HL7®) is a not-for-profit, ANSI-accredited standards-developing organization 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. HL7 is supported by more than 1,600 members from over 50 countries, including 500+ corporate members representing healthcare providers, government stakeholders, payers, pharmaceutical companies, vendors/suppliers, and consulting firms. Visit www.hl7.org to learn more.
As a key partner in the work to enhance demographic data standards, subject matter experts and consultants from HL7 presented a series of trainings on critical concepts and processes for the development and use of health data standards. These 101-level sessions were aimed at providing education on core topics related to standards development and health information exchange.
The first session, presented by Diego Kaminker, Deputy Chief Implementation Officer at HL7, introduced the concept of Fast Healthcare Information Resources (FHIR®) and discussed how certain policies are pivotal to driving standards development and adoption to advance critical healthcare interoperability efforts.
The second session, presented by Rita Torkzadeh and Jamie Parker, senior consultants, and digital health subject matter experts at AEGIS, introduced HL7’s processes that guide and promote development of consensus-based health information technology standards, including many that support national and global interoperability goals.
Funding Disclosure | Phase I of the Demographic Data Element Modernization (DEMo) Initiative was funded by AHIP, including the Phase 1 Report, which was conducted in collaboration with Civitas Networks for Health and Health Level Seven® International (HL7®).
