Health-RI wiki v4.0 -> consultatie (open tot 03-12-2024)
Obstacle removal trajectory
- Health-RI
datum: 11-05-2024 Status: FOR REVIEW
Â
This page describes the Obstacle Removal Trajectory within the Health-RI ecosystem. The Obstacle Removal Trajectory (OVT) is described in detail on the Healt-RI.nl website, including information about the various activities and results.
In 2021, the 'Obstacle Removal Trajectory' was started to achieve an integrated national infrastructure for health data to promote (re)use of health data for healthcare evaluation, quality, policy, research and innovation. With this Obstacle Removal Trajectory, a steering group chaired by the Ministry of Economic Affairs works in close collaboration with VWS, OCW, Health-RI and field parties to solve obstacles that hinder this.
The central question of the Obstacle Removal Trajectory is: what is needed for optimal (re)use of health data for the benefit of citizens and professionals? Obstacles that still stand in the way of this were previously defined. These obstacles were divided into three clusters. We are now working integrally on eight solutions. The solutions we will be working on together in the coming years are:
Document with shared why and national principles
Public communication campaign
Integrated legislation and regulations
Register of control
System for unique coupling key
System to record health data once for multiple use
System for clear assessment and request of data
Automated process for managing, issuing and using the data
You will not recognize the solutions as described above as such in the chapters of this wiki. A basic structure has been chosen for the wiki that is derived from the Nictiz Interoperability Framework. This is a frequently used and therefore recognizable structure within healthcare. For those involved and interested in ORT, the reading guide below has been drawn up for each solution direction to lead you to relevant pages, both in this wiki and on other websites.
Cluster 1: Common why
Solution direction 1: A document with a common why and national principles
Subject | Description |
|---|---|
This page explains the status of the glossary for the national agreement document and the national principles. There is also a subpage per national principle with an explanation per principle. | |
Definitions are essential to understand the architecture and agreements. Page contains the draft glossary for the national agreement document. | |
Principles provide direction for the design, preparation, management and further development of the Health-RI Architecture Design. The principles contain roles and responsibilities that are included in the national agreement document. | |
The frameworks that the Health-RI ecosystem must comply with. Contains both national principles and laws and regulations | |
An overview of the different roles of participants in the Health-RI ecosystem in the context of offering and purchasing health data and services. The tasks and responsibilities in the Health-RI ecosystem are structured through roles. | |
An overview of the functions of a node within the Health-RI ecosystem and a breakdown into types of nodes. | |
An overview of the different (types of) participants in the Health-RI ecosystem and describes, based on the roles, how they relate to the Health-RI ecosystem. |
Solution direction 2: Public communication
Subject | Description |
|---|---|
This page describes the state of affairs regarding public information and communication. | |
Future platform for general information on the importance of reusing health data for research, policy and innovation |
Cluster 2: The rules of the game
Solution direction 3: Integrated legislation and regulations
Subject | Description |
|---|---|
The frameworks that the Health-RI ecosystem must comply with. Contains both national principles and laws and regulations | |
A description of activities that contribute to solution direction 3 'Integrated legislation and regulations'. |
Solution direction 4 : A national register for terms of use
Subject | Description |
|---|---|
Description of the principles for a generic terms of use service | |
Project description: research into Mitz as a terms of use register for secondary use | |
Frequently asked questions about consent and objection procedures (ELSI Servicdesk) |
Solution direction 5: Encrypted BSN as a unique data linking key
Subject | Description |
|---|---|
Document drawn up in collaboration with field parties in which options for secure and precise linking of health data are considered. |
Cluster 3: Technology in practice
The solution directions from cluster 3 are based on the joint health data architecture model and the infrastructure for research and innovation. We recommend that you first read the articles below before diving into the individual solutions.
Subject | Description |
|---|---|
General description of the joint health data architecture model. | |
General description of the health data infrastructure for research and innovation, which is derived from the joint health data architecture model. | |
An overview of the different roles of participants in the Health-RI ecosystem in the context of offering and purchasing health data and services. The tasks and responsibilities in the Health-RI ecosystem are structured through roles. |
The solutions are described in this wiki according to the Nictiz Interoperability Framework. This means that information about agreements is offered at the level of organizational policy, process, information, application, and IT infrastructure. In the reading guide below, the pages are grouped by solution direction.
If you want to delve deeper into a solution, you can start with the storyline of a theme. This provides a description of the process that is proposed or agreed (including process diagram). Further elaboration of this process takes place in the underlying pages (information, application and IT infrastructure).
Solution direction 6: A system to record health data once for multiple use
Subject | Description |
|---|---|
This describes how a data source generates new data points during a study. | |
This describes how data is made available for multiple use. This concerns both research data and healthcare data transformed into research data. | |
Description of the preferred standards within the Health-RI ecosystem, definition of the minimum metadata set. See also subpages of this chapter  | |
Description of the principles for a metadata template library. | |
This describes how research is prepared and the data is ultimately published. This article was written using the context of the data life cycle and the HORA business processes research. | |
Functional components: Systematic health data recording once for multiple use | Description of the list of functional components already identified |
Description of the positioning and principles for a data governance committee. | |
Description of the principles for a (de)pseudonymization service. |
Solution direction 7: A system for unambiguous assessment and request of data
Subject | Description |
|---|---|
A description of how a data user can search for data that fits the research question via a researcher portal. | |
Information about requirements for a national health data catalog  | |
Information about the requirements for the Health-RI data request tool | |
Description of the principles for a data request service. | |
Functional components: system for unambiguous assessment and request of data | Description of the list of functional components already identified |
Description of the feature |
Solution direction 8: An automated process for managing, issuing and using the data
Subject | Description |
|---|---|
Agreements that support compliance and security by design | |
A description of a data holder's process to make the data available to the data user after an approved request. Â | |
A description of how a researcher applies the requested data in a secure processing environment. | |
A description of how a federated analysis created by the data user is performed. | |
Information about requirements for secure processing environments | |
Functional components: Automated process for managing, issuing and using the data | Description of the list of functional components already identified |
Description of the functionality, positioning, principles and preconditions for an addressing service. | |
Description of the functionality, positioning, principles and preconditions for an authorization service. | |
Description of the functionality, positioning, principles and preconditions for an identification and authentication service. | |
Registers for the identification of organisations and persons | An overview of the registers in the Health-RI ecosystem in which organizations, people, care processes, research processes, objects and data can be found and identified. |
A discussion paper on persistent identifiers for datasets. | |
Description of the feature | |
Description of the principles for a generic terms of usel service |
Â