Promoting FAIR Data Through Community-driven Agile Design: the Open Data Commons for Spinal Cord Injury (odc-sci.org)

Neuroinformatics, 2022 · DOI: https://doi.org/10.1007/s12021-021-09533-8 · Published: August 4, 2021

Spinal Cord Injury Healthcare Research Methodology & Design

Simple Explanation

The study addresses the challenge of developing data sharing infrastructures to meet the demands of open data sharing for improved reproducibility and translation of biomedical research. The Open Data Commons for Spinal Cord Injury (ODC-SCI) was developed with community-based agile design requirements pulled from workshops with multiple stakeholders. The ODC-SCI focuses on heterogeneous tabular data collected by preclinical researchers including bio-behaviour, histopathology findings and molecular endpoints.

Study Duration

Not specified

Participants

Researchers, consumers, non-profit funders, governmental agencies, journals, and industry members

Evidence Level

Not specified

Key Findings

1
The SCI community was receptive to data sharing, but there were disagreements on how open or restrictive sharing should be.
2
Community-driven recommendations for FAIR data sharing include sharing individual-subject data in tabular form, flexible user permissions, and data curation processes.
3
Educational hands-on workshops are instrumental for bringing awareness of FAIR data sharing efforts to the broader community.

Research Summary

The paper reports on the development of the Open Data Commons for Spinal Cord Injury (ODC-SCI), a data-sharing ecosystem focusing on preclinical data. ODC-SCI was developed with community-based agile design requirements directly pulled from a series of workshops with multiple stakeholders. The development and adoption of FAIR principles by a research community may require several years of collective effort by multiple stakeholders.

Practical Implications

Community-Based FAIR Technology

Emphasize community acceptance ahead of engineering perfection.

Cultural Change

Recognize cultural change is slow and needs constant effort in parallel to offering technological solutions through a portal.

Stakeholder Engagement

Multiple levels of research community engagement with multiple stakeholders are essential for evolving a data publication culture and the data platform.

Study Limitations

1
The odc-sci.org is in its late beta stage of development.
2
Advanced functionalities such as incorporating tools for increasing interoperability and reusability are still works in progress.
3
A campaign to increase user engagement is planned as the portal moves into full production.

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