Table 3 The most relevant best practices on data governance for health data hubs
From: Health data hubs: an analysis of existing data governance features for research
Best practices | Description/example |
|---|---|
Configure your data hub in a centralized way | That is, it requires a connection process for whom the data hub receives and stores the data directly. For example, a specific data hub has the control of the data stored and can receive and store data from a single source and/or from multiple sources |
Complete and sign a Data Processing Agreement (DPA) | The DPA includes the data use policy and contracting situations, as well as the agreed terms between the data access provider and data processor in terms of processing |
Apply mechanisms of quality control to the data | For instance, a data hub can include data only if it reaches a certain quality level or performs data quality controls for internal use |
Define a formal procedure to find out who provides the data | In this sense, for data management it is relevant to know who provides the data through a formal procedure (i.e. legal contracts, agreements, or open information in the organization) |
Provide a catalogue of the different data sources | For example, that catalogue is really useful in the case of a data hub that connects to several data sources |
Apply anonymization and/or pseudonymized methods | For instance, in the case of health data hubs that do not receive anonymized data, anonymization and/or pseudonymized methods are recommended as applicable to comply with general data protection regulation (GDPR) rules [32] |
Use any tool to check for errors and data integrity | This best practice is included because checking for errors and completeness is another important aspect of data quality in data hubs. For example, tools such as Checksum, HEX/SHACL, XSD Schemas, SQL-Scripts, R-dlookr, or even an automatic web-based check, a data submission portal and manual checks of certain variables or a specific software developed for the purpose of the network |
Include in the data hub website a data governance section describing the data governance model used | Important information related to the data governance model or data management can be provided by data hubs through their websites |