Return to Search

Universal Implementation Guide for Family Health History (Jira PSS-2389)

Return to Search

Basics

Project Name
Universal Implementation Guide for Family Health History (Jira PSS-2389)

Project Number
1886

Project Type

Product Family

Products
FHIR Implementation Guide

Project Intent
Implementation Guide

Ballot Type

Details

Description

Creating a new IG that updates and expands current FHIR profiles and resources for family health history. This product will support both the transition from older non-HL7 standards currently in use, and also compatible with existing FHIR core profiles of FamilyMemberHistory and FamilyMemberHistory – Genetics. This project will go further by combining family health history with genetic data for advanced analysis. It will also encourage the creation of other FHIR profiles for specific use cases, such as family health history and pharmacogenomics.

Project Need

Family health history is still underutilized in clinical care. Family health history data collection apps are not integrated with genetic testing labs and electronic health record systems. This IG will be key in developing a new ecosystem for family health history.

Objectives and Deliverables
FHIR IG - STU - Target: 2025 January Ballot Cycle

Project Document Repository
https://confluence.hl7.org/display/CGW/CG+WG+Products PSS: https://jira.hl7.org/browse/PSS-2389?src=confmacro

Collaboration Efforts
National Cancer Institute (NCI US), CDC National Family Health History Group (US), GA4GH Clinical & Phenotypic Data Capture (Clin/Pheno) Work Stream- A Recommendation for The Common Data Set for Family Health History, Pedigree KIN Ontology, and Phenopackets, Global Genomics Medicine Collaborative (G2MC) FHH Flagship Project group, commercial mobile app development (Netherlands, Ukraine), Pharmacogenomics for Family Health History, IVF fertility advocates

Dependencies
Compatibility with existing FHIR core profiles of FamilyMemberHistory, FamilyMemberHistory – Genetics, and PED format.

Stakeholders
Other (specify in Misc. Notes below)

Implementers
National Cancer Institute (NCI), Center for Disease Control Genomics (CDC), Global Alliance for Genomics and Health (GA4GH), Global Genomics Medicine Collaborative (G2MC), academic and commercial research organizations, commercial digital health vendors

External Drivers
Genetic and Genomic research and clinical champions globally are asking for family health history standards for data interoperability.

Common Names
Universal FHH IG

Lineage

External Vocabularies

Backwards Compatibility
Yes

Joint Copyright
No

Misc Notes
2024 June: TSC approved Updated Project Approval Request for Universal Implementation Guide for Family Health History Stakeholders: Academic/Research, Association/Goverment Agency, Healthcare IT Vendors, Healthcare Provider/user, Patients, Pharmaceutical/Biotech, Providers, Standards Development Organizations (SDOs) Other Stakeholders: Healthcare delivery systems, Genetic Counseling, genetic testing laboratories, public health, direct-to-consumer genetic testing and ancestry services, genealogy, ISO, WHO, international healthcare funders

Organization & Realm

Realm
Universal

HL7 Affiliate

People

Project Facilitator
Grant Wood

Publishing Facilitator

Vocabulary Facilitator

Sponsor(s)
Clinical Genomics Work Group

Co-Sponsor(s)
Patient Care Work Group

Accelerators

Status & Dates

Project State
Active

Project Status
Active Project (Resources assigned to pjt)

Start Date
02/26/2024

End Date
05/01/2025

End Date Text
2025 May WGM/Ballot

Next Milestone Date
01/01/2025

Next Milestone Date Text
2025 Jan WGM/Ballot

Ballot Cycle Info

Approvals

TSC Approval Date

USRSC Approval
Not Needed

Management Group Approval
All Received

CoSponsor Approval

Management Group Approval Info
FHIR Management Group -- Agreed -- (PSS-2397)

System Info

JIRA Issue ID
232891

JIRA Issue Key
PSS-2389

Jira URL
https://jira.hl7.org/browse/PSS-2389

View Ballot Items (with NIBs)

Created Date

Created By

Updated Date
02/02/2026

Updated By
Jira Project Service

Return to Search