Table 1.
Profiles depending on the kind of data hub organization
Data hubs managed centrally | Data hubs having decentralized management | |
---|---|---|
Actors | No peculiarities |
May not a single data controller No data management strategy |
Data aspects |
Control the data stored Data from ‘general population’ Use ‘text’, ‘numbers’ Receive and store data from: single source, multiple sources |
Data from ‘patient groups’, ‘general population’, ‘experimental settings’ Use ‘text’, ‘images’, ‘numbers’ Data stored in ‘XML’ |
Business processes |
Data quality control SOPs Procedure to know who provides data |
No peculiarities |
ELSI aspects |
Pseudonymized data Require legal approval |
No peculiarities |