Data governance committee

DATE: 29-01-2024 STATUS: ADOPTED

 

Each condition-specific domain has its own processes and associated data; The data that occurs for almost all conditions is called generic data. From the sunflower metaphor it can be stated that the heart of the sunflower contains the generic data and the sunflower petals represent the various condition-specific domains.

There should be a data governance committee for the generic part and each specific domain. This is coordinated by one authorized management party, which, together with the domain expert, draws up a standard definition for the relevant domain.

The domain experts can consist of:

• Care: FMS, Scientific associations​

• Other uses, such as research, policy, citizens and innovation

• System manager​

The data governance committee determines and manages:

• Standardized treatment process and protocols

• Determine set of necessary data points from standard treatment process(es).

• Minimal dataset with associated metadata set

• Unit of language for the data set in question (coding and modeling); whereby the relevant data governance committee is spokesman to the (international) standard holders to, if necessary, implement harmonization adjustments to prevent loss of quality during data transformation as much as possible.

• FAIR metadata templates

• Data converter definitions between different audiences within the unity of language.