Table 1 Profiles depending on the kind of data hub organization
From: Health data hubs: an analysis of existing data governance features for research
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 |