datum: 12-02-2024 Status: FOR REVIEW

 

The joint health data architecture, both for primary and secondary use, is further specified here for the specific application for research, policy and innovation. The Multiple Use module and the Generic Functions module are unchanged.

The Applications module includes an ecosystem for researchers, in which the researcher is facilitated to work on reusable research results from the start. This means that no additional work needs to be done to make these research results suitable for multiple use afterwards as a research data source (5); mopping with the tap closed. (Dutch saying).

Open

In this image (4) EPD en (5) EDC are examples of data sources. Other potential data sources are PHR, ECD, GPIS (a.o.)

This research ecosystem consists of a portal (22) with a rich set of functions and tools, such as

• Data search, discovery and requests

• Feasibility Study

• Feedback loop to improve data quality at the source

• A library with various analysis, data capture tools

• Training facilities

The various software applications work totally integrated. Researcher can easily navigate to the metadata catalog (23) to select an existing dataset for the research, which is requested through workflow processes and can be processed after approval (26) in the desired central (24) or federated (25) processing environment with chosen analysis tools.

Approval (26) can take place both locally and centrally; If data is requested from multiple sources, it is possible that from one source perspective the result of the request does not lead to personally identifiable information, but the combination of different sources could lead to personally identifiable information. That is why a central data access committee is needed

Service providers Health-RI - (regional) nodes - generic functions

A (regional) node provides the Multiple Use module as a joint data holder. Not every health institution is able to access data sources (4) and (5) (6) and to code, model and make them FAIR (8) in a persistent data platform (7), and then use a standard API (9) present to different applications. A (regional) hub is a shared service center with sufficient economy of scale, which provides these services for (smaller) healthcare institutions (in the region). This involves a zoned persistent data platform in which the various healthcare institutions have their own piece of data, which is processed for them into reusable data by data stewards from the shared service center.

In the Applications module, Health-RI provides an ecosystem for researchers where researchers can easily find, request, process and analyze all available data in a customized analysis processing environment with the desired analysis tools and Electronic Data Capturing Tools (EDCs). They are facilitated to in turn deliver reusable research results.

Due to the standardized design of the data holders in the Multiple Use module, (regional) nodes or other organizations can also provide an ecosystem for researchers for specific applications, for example.

In principle, all participating parties in the Health-RI ecosystem use the national generic functions