What We Heard Report: Lung Health Strengthening Workshop

Overview

On November 5, 2025, the Canadian Institutes of Health Research (CIHR), in collaboration with the Institute of Circulatory and Respiratory Health (ICRH), the Institute of Cancer Research (ICR), and the shAIRe consortium, hosted the Lung Health Strengthening Workshop in Ottawa. This hybrid event brought together research teams funded through the CIHR Team Grant in Lung Health (launched in 2023).

These five-year grants support interdisciplinary research teams addressing threats to lung health and are encouraged to collaborate on three cross-cutting themes: knowledge mobilization, data and biosamples, and training and capacity development.

The workshop focused on the data and biosamples theme and aimed to align teams, support collaboration, and share progress, challenges, and lessons learned from existing pan-Canadian data initiatives. It featured two panel discussions: one on Canadian resources to facilitate open science and another on learnings from existing pan-Canadian data initiatives, followed by interactive Q&A. This report summarizes the insights and recommendations that emerged.

Overview of Key Insights and Resources Shared During the Workshop

Canadian resources to facilitate open science

Participants explored Canadian open science policies, national strategies, and genomics efforts that shape the policy environment lung health researchers must navigate, including expectations for responsible data access, linkage, and reuse. The insights and resources listed below help clarify what is expected, what supports exists, and where research teams can align to accelerate progress.

• CIHR's Vision and Open Science Policy Landscape

  As Canada's federal funding agency for health research, CIHR is strongly committed to open science, which relies on open data as a foundational pillar. CIHR highlighted three key policy areas that guide this work:

  • Research Assessment (DORA): Recognize and reward data sharing
  • Open Access Publications: Current policy under review
  • Tri-Agency Research Data Management Policy

  These policies are integrated into CIHR funding opportunities through:

  • Data Management Plans
  • Requirement to respect Indigenous data sovereignty, including
    • The First Nations Principles of OCAP
    • CARE Principles for Indigenous Data Governance

  Together, these measures promote data access, sharing, and reuse across Canadian health research initiatives.

• Institute-Led Strategic Priorities on Lung Health

  ICRH presented its Institute Research Priority Plan 2024–2034, which identifies accessible health data, digital tools, and AI as key enablers for advancing lung health research. A core element of this strategy is the development of an Acute Care Science Hub to support data sharing, interoperability, and collaboration across research fields.

  These priorities aim to strengthen:

  • Access to high quality lung health data
  • Interoperability across institutions
  • Collaboration within and beyond the funded teams
• Genomics Efforts in Canada

  Updates were provided on the Canadian Genomics Strategy and CIHR's Genomics Data & Capacity Building Initiative, both designed to improve collaboration and data accessibility across genomics ecosystems. A central component is the adoption of standardized, disease agnostic consent approaches mandated by Genome Canada and CIHR.

  These consent standards support:

  • Anonymization
  • Ethical recontact
  • Responsible long term data reuse across studies

Learnings from Existing Pan-Canadian Data Initiatives

Participants explored pan Canadian data and biosample initiatives that offer practical resources to support data sharing, governance, harmonization, and reporting. The initiatives highlighted below present tools and frameworks that can be applied across different research contexts.

Workshop Takeaways

This section provides a high-level overview of the key messages, discussions, and recurring themes that emerged throughout the workshop along with the practical recommendations identified by participants.

• What We Heard

  • Data governance, consent, and ethics processes remain inconsistent across institutions, creating delays and limiting data sharing.
  • Teams expressed a strong need for standardized templates, agreements, and reporting practices to support collaboration.
  • Early planning for harmonization, metadata, and linkage was identified as essential for enabling reuse across studies and provinces.
  • Indigenous data sovereignty principles must be integrated from the outset in any data or biosample activities.
  • National platforms and resources already exist to support access, linkage, harmonization, and reporting, and teams emphasized not reinventing the wheel.
  • Interoperability and common data models (such as the Observational Medical Outcomes Partnership (OMOP) Common Data Model) were recognized as important for enabling cross team and cross jurisdictional analyses.
• Actionable Recommendations

  • Promote open science and data sharing (e.g. embedded FAIR principles in data management)
  • Standardize consent and ethics practices (e.g. adopt the CMAJ Consent Guidance)
  • Align data governance and policies across research activities
  • Uphold Indigenous data sovereignty in governance and data-sharing
  • Build training and capacity
  • Standardize technical standards and interoperability
  • Advance equity and accessibility
  • Strengthen reporting and quality control

For additional questions about the report, please contact icrh-iscr@cihr-irsc.gc.ca.

Date modified:

2026-03-30