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Playbook for Health Data Sharing Ecosystems
Welcome to the Playbook for Health Data Sharing Ecosystems
Data Sharing Approaches
Introduction to Data Sharing
Copy and Download
Researcher to Data
Model to Data
FAIR Data Exchange
Introduction to FAIR Data
Findable
Persistent Identifiers
Rich Metadata
Metadata Linkage
Data Indexing
Accessible
Retrievable Metadata
Persistent Metadata
Interoperable
Knowledge Representation
Vocabularies
Qualified References
Reusable
Reusable Metadata
FAIR Data Points
Building Blocks
Metadata Layer
Matching Layers
Metadata Standards
Schematics
Data Integration Workflow
Data Sharing Workflow
Data Integration Architecture
Data Sharing Architecture
Privacy-Enhancing Technologies (PET)
Introduction to PETs
Data Minimalization
Algorithmic PETs
Model-to-Data PETs
Augmentation PETs
Concluding remarks and variations of the techniques and solutions
Legislation
Legislation relevant for sharing of health data
Basic Principles of the GDPR
WGBO - Medical Treatment Agreement Act
WMO - Medical Scientific Research with Persons
CTR - Clinical Trial Directive and Regulation
Wabvpz - Supplementary Provisions for the Processing of Personal Data in Healthcare Act
96/9/EC - The Database Directive
2004/23/EC - Human Tissues and Cell Directive
MDR - Medical Device Regulation
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Index
