Agreements on the National Health Data Infrastructure for Research, Policy and Innovation
This is the main page of the English version of the Health-RI Wiki which describes the National Health Data Infrastructure agreements for research, policy and innovation. This page explains
Where the National Health Data Infrastructure agreements for research, policy and innovation apply,
Why we chose the Wiki format
How the Wiki is structured.
The Mission, Vision and Approach are described on the Health-RI website. The Health-RI Foundation strongly believes in the power of collaboration. All relevant parties work together in the Health-RI ecosystem; healthcare professionals, policy makers, patient organizations, researchers and industry. Only by building a common vision and approach can we realize the necessary health data infrastructure.
We play the game together. The Health-RI wiki is intended to describe the rules of the game and the framework within which they are played. The jointly established rules are described in the Agreements summary article.
The Introduction provides relevant background information
The Obstacle Removal Trajectory; an important program within the Health-RI ecosystem
The architecture; the talking point of the foundation under the agreements National health data infrastructure for research, policy and Innovation.
The context
Answers to frequently asked questions (FAQ)
The Reading Guide is included in the introduction. The various parties and target groups are interested in different aspects of the National Health Data Infrastructure agreements for research, policy and innovation. A Wiki is better than a document to navigate between the different aspects. In addition to the basic structure of the Health-RI wiki, a specific Reading Guide indicates for the various target groups which articles are particularly interesting for them.
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. Support is an essential aspect for the success of the National Health Data Infrastructure for research, policy and innovation. That is why this element has been added. The Basic Structure therefore consists of:
Summary of agreements; As a kind of management summary, the most important agreements that appear in the Health-RI wiki are summarized in the first chapter.
Acceptance describes the national principles on which the system of agreements is based, public communication and information about the reuse of health data and explains the concepts used with the thesaurus to achieve a shared conceptual framework in the Health-RI ecosystem. Broadly supported principles and good information about them are essential to arrive at a shared 'why' of a health data infrastructure. The national principles also contribute to the agreements, practical elaboration and implementation of the Health-RI ecosystem. Jointly defining the why, with the aim of creating support, is reflected in the Obstacle Removal Process (solutions 1 and 2).
Laws and regulations describe the laws, regulations and guidelines that define the boundaries for interoperability within the Health-RI ecosystem. However, law and practice do not always correspond. Integrated legislation and regulations are one of the solutions of this system of agreements and are included in the Obstacle Removal Process (solution 3).
Security describes the security agreements that apply in the Health-RI ecosystem.
Organizational policy describes the organizational cooperation agreements. An important part of this is the description of the ultimately responsible roles in the Health RI ecosystem.
Process describes the research and innovation process that the Health-RI ecosystem aims to support as best as possible. In addition, the roles and responsibilities arising from the storylines are described here.
Information describes agreements about the information that is exchanged in the Health-RI ecosystem.
Application / IT infrastructure describes the standardized application (components) and the ways in which they communicate with each other. This layer not only describes which roles and responsibilities must be fulfilled, but also provides information on how these are fulfilled based on concrete process implementations.
Colophon
Participants in the process of open consultation of the Health-RI wiki version 2.0 can be classified by RACI model definition:
R (Responsible); The person responsible for creating text. These participants work in their own title or on behalf of an organization in writing the texts and/or providing critical feedback.
A (Accountable); The person who is (ultimately) accountable, authorized and approves the result. When it comes to the point, he/she should be able to make the final judgment, have veto power. There is only one person Accountable (per topic).
C (Consulted); This person (partly) gives direction to the result, he / she is consulted without obligation prior to decisions or actions.
I (Informed); Someone who is informed about the decisions, about the progress, results achieved, etc.
Following the RACI model the next section provides an overview of participants who participated in the Wiki v2.0. We have taken a thorough approach in compiling this list. If you are listed here unjustly, incorrectly or undesirably, please send an email to 'info@health-ri.nl' with subject 'Aanpassing in colofon/ FAQ lijst betrokkenen Health-RI Wiki'. It will then be amended as soon as possible.
Accountable
(A) The person ultimately responsible(s), with name, and organization (and the subject for which one is ultimately responsible)
Name | Organization |
---|---|
Niels Bolding | Health-RI |
Responsible
(R) The participants who are jointly responsible are listed with
Name
Organisation
Name | Organisation |
---|---|
Hans van den Berg | Amsterdam UMC |
Christiaan Geertsma | Amsterdam UMC |
Raoul Boomsma | Erasmus UMC |
Anne-Lotte Beckers | Health-RI |
Anne van der Kant | Health-RI (contactpersoon werkgroep analyse) |
Bruna Vieira | Health-RI |
Chantal Steegers | Health-RI |
Dena Tahvildari | Health-RI |
Elyse van Heertum | Health-RI |
Evelien de Jong | Health-RI |
Esther Bron | Health-RI (contactpersoon werkgroep imaging) |
Ife Olaegbe | Health-RI |
Jack Broeren | Health-RI |
Jeroen Beliën | Health-RI (contactpersoon hoofdarchitecten) |
Jolanda Strubel | Health-RI (contactpersoon FAIR DI) |
Pim Volkert | Health-RI (contactpersoon werkgroep klinisch) |
Rob Hooft | Health-RI (contactpersoon werkgroep omics) |
Tasneem Khan | Health-RI (contactpersoon werkgroep ‘zoeken en aanvragen’) |
Tom van den Heuvel | Health-RI |
Susanne Rebers | Health-RI |
Sander de Ridder | Health-RI |
Anneloes Van Walsem | Health-RI |
Lucie Kulhankova | Health-RI |
Stefan Klein | Health-RI |
Hannah Neikes | Health-RI |
Ana Konrad | Health-RI |
Miriam Beusink | Health-RI |
Mark Janse | Health-RI |
Esther van Enckevort | Health-RI |
Kees Burger | Health-RI |
Jip Fransen | LUMC |
Luiz Bonino da Silva Santos | LUMC |
Igor Schoonbrood | Maastricht UMC+ |
Ton Brouwer | Philips |
Marieke Groeneveld | Radboudumc |
Sesni Bos | Radboudumc |
Sander Bervoets | Radboudumc |
John van den Berge | SURF |
Mart Wetzels | TU Eindhoven |
Martijn ten Napel | TU Eindhoven |
Robert Vogels | TU Eindhoven |
Toine Kuiper | TU Eindhoven |
Sandor Schmikli | TU Eindhoven |
Paul Albregt | UMC Utrecht |
Ruud Bongers | UMC Utrecht |
Eduard Boer | UMCG |
Jan Joost van Walsum | UMCG |
Michael van der Zel | UMCG |
Martijn Veening | UMCG |
Consulted
(C) participants who have provided non-binding feedback and advice may indicate whether or not their details should appear in the imprint, with
Name
Organisation
Name | Organisation |
---|---|
Jan van den Brand | Erasmus UMC |
Marian Beekman | LUMC |
Johan van Soest | Maastricht UMC+ |
Morris Swertz | UMCG |
Maaike Karemaker | VWS |
Reinier Morra | Zorginstituut NL |
Informed
The Health-RI wiki will be published on the Health-RI website, accessible for everybode. By social media and other channels interested parties will be notified.
Title | Health-RI Wiki |
Version | 3.0 - august 23 2024 |
Contact | Health-RI Foundation |