ArticleScientific data2023
A guide to sharing open healthcare data under the General Data Protection Regulation.
Article in Scientific data, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 44 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
44 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Impact of online patient access to clinical notes on quality of care: a systematic review.BMJ quality & safety · 2026Pooled it
- Artificial intelligence in rehabilitation: a living systematic mapping review - first release.European journal of physical and rehabilitation medicine · 2025Pooled it
- Synthetic data generation: challenges and perspectives for gastrointestinal medicine.Nature reviews. Gastroenterology & hepatology · 2026Review
- Advanced drug delivery platforms targeting cellular senescence: A promising strategy for cancer therapy.Acta pharmaceutica Sinica. B · 2026Review
- Digital epidemiology: Utilizing big data for public health surveillance and disease outbreak prediction.Journal of public health research · 2026Review
- TrialMatchAI: an end-to-end AI-powered clinical trial recommendation system to streamline patient-to-trial matching.Nature communications · 2026Article
- Privacy rights and improving knowledge are not hierarchical needs: data protection and good epidemiologic standard (DP_GOES) checklist for retrospective observational studies using secondary data.BMC medical research methodology · 2026Article
- Quantifying the effects of pseudonymisation on epidemiological research reliability: a tailored evaluation using a clinical data warehouse.BMC medical informatics and decision making · 2026Article
- Medical Digital Twin Technology for Interoperability: Challenges and Opportunities.Biomedical engineering and computational biology · 2026Review
- RMS: a ML-based system for ICU respiratory monitoring and resource planning.NPJ digital medicine · 2025Article
- Benchmarking Foundation Models with Multimodal Public Electronic Health Records.IEEE journal of biomedical and health informatics · 2025Article
- Medical machine learning operations: a framework to facilitate clinical AI development and deployment in radiology.European radiology · 2025Review
- Patient Perspectives on AI- and XR-Enabled Telemedicine: A Cross-Sectional Survey in Romania.Healthcare (Basel, Switzerland) · 2025Article
- Challenges and Recommendations for Electronic Health Records Data Extraction and Preparation for Dynamic Prediction Modeling in Hospitalized Patients: Practical Guide and Tutorial.Journal of medical Internet research · 2025Article
- Multidimensional social signature de-anonymizes low-sensitivity data.Scientific reports · 2025Article
- Integrating advanced neural network architectures with privacy enhanced encryption for secure and intelligent healthcare analytics.Scientific reports · 2025Article
- A textual dataset of de-identified health records in Spanish and Catalan for medical entity recognition and anonymization.Scientific data · 2025Article
- Research Electronic Data Capture (REDCap) for Population-Based Data Collection in Low- and Middle-Income Countries: Opportunities, Challenges, and Solutions.Journal of medical Internet research · 2025Article
- MRMS-CNNFormer: A Novel Framework for Predicting the Biochemical Recurrence of Prostate Cancer on Multi-Sequence MRI.Bioengineering (Basel, Switzerland) · 2025Article
- Developing a Scalable Annotation Method for Large Datasets That Enhances Alarms With Actionability Data to Increase Informativeness: Mixed Methods Approach.Journal of medical Internet research · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
18 authors.
Funding
Abstract
Sharing healthcare data is increasingly essential for developing data-driven improvements in patient care at the Intensive Care Unit (ICU). However, it is also very challenging under the strict privacy legislation of the European Union (EU). Therefore, we explored four successful open ICU healthcare databases to determine how open healthcare data can be shared appropriately in the EU. A questionnaire was constructed based on the Delphi method. Then, follow-up questions were discussed with experts from the four databases. These experts encountered similar challenges and regarded ethical and legal aspects to be the most challenging. Based on the approaches of the databases, expert opinion, and literature research, we outline four distinct approaches to openly sharing healthcare data, each with varying implications regarding data security, ease of use, sustainability, and implementability. Ultimately, we formulate seven recommendations for sharing open healthcare data to guide future initiatives in sharing open healthcare data to improve patient care and advance healthcare.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.