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Record W4407410296 · doi:10.2196/63996

A Call for Action: Lessons Learned From a Pilot to Share a Complex, Linked COVID-19 Cohort Dataset for Open Science

2025· article· en· W4407410296 on OpenAlexfundvenueno aff
Clara Amid, Martine Y. van Roode, Gabriele Rinck, Janko van Beek, Rory D. de Vries, Gijsbert P. van Nierop, Eric C. M. Van Gorp, Frank Tobian, Bas B. Oude Munnink, Reina S. Sikkema, Thomas Jaenisch, Guy Cochrane, Marion Koopmans

Bibliographic record

VenueJMIR Public Health and Surveillance · 2025
Typearticle
Languageen
FieldDecision Sciences
TopicScientific Computing and Data Management
Canadian institutionsnot available
FundersUniversitätsklinikum HeidelbergErasmus Medisch CentrumEuropean CommissionEuropean Molecular Biology LaboratoryMcMaster University
KeywordsData sharingTimelinePreparednessInteroperabilityOpen dataData scienceComputer scienceOpen scienceWorld Wide WebMedicineGeographyPolitical science

Abstract

fetched live from OpenAlex

Unlabelled: The COVID-19 pandemic proved how sharing of genomic sequences in a timely manner, as well as early detection and surveillance of variants and characterization of their clinical impacts, helped to inform public health responses. However, the area of (re)emerging infectious diseases and our global connectivity require interdisciplinary collaborations to happen at local, national and international levels and connecting data to understand the linkages between all factors involved. Here, we describe experiences and lessons learned from a COVID-19 pilot study aimed at developing a model for storage and sharing linked laboratory data and clinical-epidemiological data using European open science infrastructure. We provide insights into the barriers and complexities of internationally sharing linked, complex cohort datasets from opportunistic studies for connected data analyses. An analytical timeline of events, describing key actions and delays in the execution of the pilot, and a critical path, defining steps in the process of internationally sharing a linked cohort dataset are included. The pilot showed how building on existing infrastructure that had previously been developed within the European Nucleotide Archive at the European Molecular Biology Laboratory-European Bioinformatics Institute for pathogen genomics data sharing, allowed the rapid development of connected "data hubs." These data hubs were required to link human clinical-epidemiological data under controlled access with open high dimensional laboratory data, under FAIR (Findable, Accessible, Interoperable, Reusable) principles. Based on our own experiences, we call for action and make recommendations to support and to improve data sharing for outbreak preparedness and response.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame machine prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.

metaresearch head score (Codex)0.173
metaresearch head score (Gemma)0.268
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesOpen science
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: none
Teacher disagreement score0.991
Threshold uncertainty score0.912

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.1730.268
Meta-epidemiology (narrow)0.0010.001
Meta-epidemiology (broad)0.0010.002
Bibliometrics0.0020.003
Science and technology studies0.0060.007
Scholarly communication0.0130.023
Open science0.0090.019
Research integrity0.0080.014
Insufficient payload (model declined to judge)0.0090.002

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.616
GPT teacher head0.563
Teacher spread0.053 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

Study designObservational
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations0
Published2025
Admission routes2
Has abstractyes

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