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Back to Plenary Participation
Group Session November 21, 2025

From Understanding to Interoperability: Findings from the RDA Health Data Commons

Plenary: RDA 26th Plenary Meeting (VP26)

Submitted by
Lauren Maxwell
Recording

Meeting objectives

Collaborative session notes:

Open session notes

This session will bring together health data, cross-domain, and metadata standards communities to advance the development and adoption of a Health Data Commons (HDC) Profile for the Global Open Research Commons (GORC). Building on ongoing work in the Health Data Commons GORC Profile WG, the session aims to:

  • Highlight shared challenges in health data interoperability, including permissions, governance, metadata fragmentation, and sensitive-data constraints and demonstrate how HDCs are addressing those challenges in different geographies, drawing from the WG’s survey and scoping review.
  • Develop an action plan for building a community of HDCs.
  • Identify next steps to advance cross-commons, cross-domain interoperability, considering key domains that interact with human health, e.g., climate–health, environmental exposures, and One Health data spaces.
  • Strengthen connections among RDA groups, EOSC, national health data spaces, and global data-commons efforts.

Meeting presenters

Lauren Maxwell, Lili Zhang, Lars Eklund, Robert Grossman

Meeting agenda

  1. Welcome & WG Overview. Framing the need for a Health Data Commons profile aligned to the GORC IM, including FAIR, CARE, and TRUST considerations.
  2. Findings from HDC Survey and Scoping Review. Overview of findings on HDC metadata elements and from the scoping review demonstrating implementation decisions from cross-national, national, and regional HDCs.
  3. Development of an action plan for building the HDC community. Concrete steps to increase the impact of RDA HDC WG outputs and build a community of HDCs to foster cross-commons interoperability.
  4. Aligning related initiatives within RDA and Beyond. Open discussion on opportunities to link up with RDA WGs and IG and related initiatives from CODATA, EOSC, IDSA, GA4GH NIF, and others. Special challenges and a way forward for linking commons across domains.

Target audience

  • Health data infrastructure developers (national, regional, and institutional)
  • FAIR, metadata, and semantic-interoperability specialists
  • RDA WGs and IGs working on sensitive data, GORC, life sciences, HRPOs, AI and data visitation, and metadata standards
  • EOSC and HDCs experts working on interoperability and governance
  • Global commons developers (e.g., climate, environment, biodiversity) interested in cross-domain reuse
  • Policy makers, legal/ethical experts, and patient-rights advocates
  • Anyone interested in FAIR convergence, cross-domain alignment, and machine-actionable metadata for sensitive human data

Group Activities and Scope

The HDC GORC Profile Working Group focuses on developing a health-specific profile of the Global Open Research Commons metadata model to support FAIR convergence and interoperability across national and transnational health data commons. Its scope includes different types of biomedical data (e.g. clinical, EHR, surveillance, cohort and biobank metadata) and the particular governance, ethical, and legal issues associated with sensitive human data. The WG will: (1) identify and characterise existing and emerging health data commons through a scoping review and landscape analysis; (2) design and run a structured questionnaire to understand how they implement metadata, governance, access conditions, and standards; and (3) use findings from the scoping review and survey to develop a Health Data Commons profile of the GORC IM, including additional attributes needed to reflect FAIR, CARE and TRUST implementation for biomedical data commons.

The WG’s main outputs are a textual Health Data Commons GORC IM profile (D1) and an implementation profile linking that model to real metadata examples from participating health data commons (D2). These outputs are intended to be non-prescriptive but machine-actionable, enabling commons developers, funders, and policymakers to compare implementation choices, identify gaps in semantic and technical interoperability, and plan investments for cross-commons and cross-domain reuse (e.g., linking health with climate, environment, and social data).

Additional links to informative material

HDC GORC Profile Working Group Case Statement:

https://www.rd-alliance.org/wp-content/uploads/2024/06/Case-Statement-V0.2-Health-Data-Commons.pdf

 

Short Group Status

The group is producing deliverables.

Applicable Pathways

Data Infrastructures and Environments - Generalist
Data Infrastructures and Environments - Discipline Focused
Semantics, Ontology, Standardisation

Avoid conflict with the following groups

GORC International Implementations Working Group (GORC II WG)
GORC International Model WG

What potential collaborations or synergies do you see between your Group/Birds of a Feather session topic and other RDA Groups or external organisations?

GORC International Implementations Working Group (GORC II WG)
Health Data Interest Group
Raising FAIRness in health data and health research performing organisations (HRPOs) WG
Public Health Graph WG
Blockchain Applications in Health WG
International Data Spaces Association, CODATA (esp. CDIF), GA4GH, EOSC Health Data Interoperability Group, EOSC Association

Please indicate at least (3) three breakout slots that would suit your meeting.

Breakout 2. Monday, 16 March, 22:30-00:00 UTC
Breakout 5. Tuesday, 17 March, 22:30-00:00 UTC
Breakout 8. Wednesday, 18 March, 22:30-00:00 UTC