Data sets

Owned by Health-RI
Aug 23, 2024
2 min read

VERSIon: 31-01-2024 STATUS: ADOPTED

In this article we identify the required datasets (which can be realized at the application level by databases or repositories) at the identified roles.

Roles and datasets (output)

Data holder

Role

Datasets

Role

Datasets

Data producer

Output:

  • Raw data

  • Metadata

  • Possibly standardized data

Data Preparator

 

Input:

  • Raw data

  • Metadata

  • Possibly Standardized data; If the data produder does not provide this (completely) itself, the data preparator must complete this

Output:

  • Standardized data

    • In accordance with agreed data model standard (OMOP, FHIR, ...)

    • Depending on the context, the data should be minimized and pseudonymized

  • Enriched metadata

Data provider

 

Input

  • Data requests from

    • Possibly implemented as a research register, in which scientific studies are kept linked to a request for data

  • Standardized data

  • Enriched metadata

Output

  • Standardized data

    • Enriched metadata

Data archiver

 

Input

  • Raw Data

  • Metadata

  • Standardized data

  • Enriched metadata

Output

  • Raw Data

  • Metadata

  • Standardized data

  • Enriched metadata

Federated analysis

 

Input

  • Standardized data

  • Enriched metadata

  • Analysis requests

Output

  • Analysis results

Local review committee data providing

Input

  • Data requests

Output

  • Results of data requests

Data user

Role

Datasets

Role

Datasets

Researcher, Innovator

Output:

  • data request

  • data question

Input

  • Standardized data

  • Enriched metadata

Healthcare professional, policymaker, and citizen

 

 

Output:

  • data request

Input

  • Standardized data

  • Enriched metadata

Data guide

 

Output

  • Aggregated set of metadata

    • The set of all metadata on which searches can be performed for data discovery and feasibility studies

  • metadata requests

Input:

  • Enriched metadata

Local review committee launch research

 

Output

  • Results data requests

Input

  • Data requests

Tool provider

 

Output

  • Software metadata

    • A catalog containing metadata about the software that can be made available to data users

Input

  • Processing environment configurations

Request federated analysis

 

Output

  • Analysis requests

Input

  • Results of analyses

Central analysis processing environment

Output

  • Generated data (e.g. from a data capturing tool)

  • Results of analyses

  • Aggregated results of analyses

    • In case of distributed analysis, the data processor should retain the aggregated results of participating data processors

Input

  • Input data for analyses