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  11. Making Human Derived Data Fair: Feedback From Nci Office Of Data Sharing Workshop.

Making human derived data FAIR: feedback from NCI office of data sharing workshop.

Mousumi Ghosh1, Ying Huang1, Heather K Basehore1

  • 1Office of Data Sharing, National Cancer Institute, National Institutes of Health, Rockville, MD, USA.

Journal of the National Cancer Institute
|December 26, 2025

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View abstract on PubMed

Summary
This summary is machine-generated.

Federal policies promote sharing biomedical research data responsibly. Workshops identified essential patient clinical data for cancer research, aiming for FAIR data principles to maximize research impact.

Area of Science:

  • Biomedical research
  • Data science
  • Cancer research

Background:

  • US federal policies, including NIH Data Management and Sharing (DMS) and Public Access Policies, mandate responsible sharing of publicly funded research outputs.
  • Ensuring scientific data is FAIR (findable, accessible, interoperable, reusable) is crucial for maximizing its usability and impact.
  • The National Cancer Institute (NCI) Office of Data Sharing (ODS) convened workshops to address clinical data sharing challenges.

Purpose of the Study:

  • To identify high-value clinical data features for collection and sharing in cancer research.
  • To explore data use challenges and propose solutions for effective scientific data sharing.
  • To establish consensus on minimum patient-derived clinical information for comprehensive cancer research.

Main Methods:

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  • Conducted a series of workshops involving researchers and stakeholders.
  • Summarized workshop discussions on data use challenges and potential solutions.
  • Identified consensus on essential patient-derived clinical data for cancer research.

Main Results:

  • Highlighted the need for structured outputs for various data types and methodologies to enable FAIR sharing.
  • Outlined attendee consensus on minimum patient-derived clinical information required for diverse cancer research.
  • Identified data use challenges and proposed potential solutions for effective data sharing.

Conclusions:

  • Workshop outputs provide a foundation for best practice recommendations on collecting and sharing impactful clinical data.
  • Proposed preliminary guidance for policymakers and researchers on consistent and effective management of human-derived clinical data.
  • Emphasized the importance of FAIR data principles for enhancing the sharing process and outcomes for data end-users in cancer research.