Changes wiki version 3.0

datE: 23-08-2024 Status: ADOPTED

 

Agreements on the National Health Data Infrastructure for Research, Policy and Innovation

Version information adjusted and names of people involved added.

Agreements summary

The last paragraph with references to wiki version 2.0 has been removed

Data is made FAIR as close to the source as possible, for multiple use.

Rephrasing paragraph 2 to make sentences flow better

The data holder is responsible for making data suitable for multiple use

First paragraph rewritten. Mention of techniques to be chosen removed.

Data is standardized based on unity of language

Title adjusted, first paragraph rewritten.

DCAT is applied as a standard for describing metadata of datasets.

First paragraph rewritten. Syntactic adjustment in the beginning of the last paragraph to improve readability.
'Connection within Europe' added as an additional goal.

Standardized API to request and make available (meta)data.

Mainly syntactic adjustments: principle to agreement.

New research results obtained from the Health-RI infrastructure are suitable for multiple use from the start.

Mainly syntactic adjustments: data developer to data specialist, principle to agreement.

Reading Guide

Removed references to wiki version 1.0

Change overview

Completely adapted for the new consultation round

Target audiences

Links in Obstacle Remove Trajectory section moved to Obstacle Remove Trajectory article. Typo removed.

Imaging working group

Trial nurse has been removed in ‘roles and actors’, spelling errors have been corrected.
In ‘ways of data exchange’ a fifth option has been added.

Omics Working Group

The sections Legal basis, Roles and actors, Information and Implementation have been supplemented. The diagram has been moved to the GDI page. Spelling errors have been corrected.
Minor linguistic adjustments have been made to metadata and Molgenis EMX2 has been better described in implementation.

Obstacle removal trajectory

This article has been largely rewritten and supplemented with a reading guide for OVT participants.

Architecture

A paragraph has been added to refer to the article 'Disclose healthcare data'

Collaborative health data architecture model

The term address book has been replaced by the term addressing (in text and image). The image in part 1 has been adjusted. The terms in the text have been synchronized with the images.
In generic function 15 (IAA) it has been added that IAA also works across organizations.
In generic function 20 (Saying) the reference to NEN has been removed and a clearer description has been given of what the generic function should do.

Health data infrastructure for research, policy and innovation

The term address book has been replaced by the term addressing (in text and image). The terms in the text have been synchronized with the images. The article has been checked in its entirety for readability. The target ‘policy’ has been added to the scope of the health data infrastructure.

Relevant initiatives in the healthcare, research and personal domains

New initiatives: TZW, IZA, NLAIC, NVS, IDS-RAM, HDAB-NL, GDI, EUCaim, Quantum.
Updated text for: HORA, Mitz, Plugin, Twiin.

Preconditions

Text at R03 EIDAS supplemented with the most recent developments.
Comment at R06 AVG and UAVG removed.
Text at R15 NEN 7522:2021 adjusted to include systems of standards in the scope in addition to standards.

Principles

UDH05: the term machine-readable is subsituted by machine-interpretable

Glossary

There are a number of new concepts and modified concepts:

The new concepts are:

• Assessment

• Economies of scale

• IAA

• Onboarding

• Ontology

• Payment service

• Request register

• Research register

• Shared service center

• Ticketing booth

• Visiting data

The modified concepts are:

• Authorative source

• Central analysis processing environment

• Cohort

• Target transformation

• Generic services

• Local research review committee

• Medical Ethical Review Committee (METC)

• Metadata

• Multiple use

• Research organization

• Registry holder

• Healthcare organization

In addition, a number of spelling errors have been corrected.

FAQ open consultation rounds

Names of contributors added.

FAQ Practical questions

A link has been added to the new article with the presentations of the consultation rounds.
Question 6 has been modified and questions 12 and 13 have been added.

FAQ Agreements

The answer to question 6 has been supplemented.

FAQ Architecture

The answer to question 3,6, 20, 27, 43, 46, 47 and 39 has been adjusted. Questions 60 to 64 have been added.

FAQ Laws and legislation

The answer to question 6 has been adjusted and question 13 has been added.

FAQ Processes

Questions 9 to 12 have been added
The answer to question 2 has been adjusted to clarify the different uses of the standards mentioned.

FAQ Information and FAIR data

Questions 32 to 47 have been added.
Questions 7 and 22 have been supplemented.

Presentations open consultation rounds

Presentation wiki version 3 has been added.

Acceptance

Text in info block adjusted

Law and regulations

This article has new content.

Security

The term security is replaced by information security

Organizational policy

A reference has been added to the new article business objects.

Roles

The info block for version 2.0 has been removed.
The generic Data broker service is new. The central analysis processing environment has been moved from the data user to the generic services.
The generic services have been put in alphabetical order to improve the readability.
The responsibility of data minimization has been added to the data provider.
Finally, a number of spelling errors have been corrected.

Processes

The overarching storyline from this article has been rewritten and placed in a new article. This page has been rewritten into an overview page for the underlying process pages (Business and Work Processes)

Storyline: generating research data

This storyline has been rewritten and needs to be re-reviewed in its entirety.

Storyline: search data in metadata

Only minor text changes (e.g. data point)

Storyline: Request data

Only minor text adjustments (consent instead of permission) and extra clarification in step 6a.

Storyline: central analysis

The sub-process of data delivery by the data holder has been removed from this storyline and included in a new article. This process is therefore shorter and advantageous

The pre-condition has been adjusted.
The post condition has also been adjusted (mentioning data exchange platform as an option)

Storyline: Federated analysis

The sub-process of data delivery by the data holder has been removed from this storyline and included in a new article. This process is therefore shorter and the precondition has been adjusted.

Storyline: making data available

In the precondition the result dataset of analysis is included in the scope.
Minor textual adjustments.

Information

Added references to the underlying articles.

Minimal (meta)dataset

A context block has been added.
Broken link fixed.

Preferred standards

Added OIDC and a reference to Omics standards article.
Column added in table for indication type of standard.
The description of SNOMED CT is updated.

Registries

Registries DEZI and ORCID have been added.

Application/ IT Infrastructure

Added references to the underlying articles

Functional components

This article has been removed. It referred to three articles that have been moved to Obstacle Removal Path

Application functions

The diagram has been adjusted: a division into data holder, data user and generic function has been added.

Collaborations

These articles have been removed. In some cases, the content no longer matched the storylines and the added value of these articles is unclear. They may return in the next version.

Authorization service

Reference to NEN Standard added

Identification and Authentication Service

This article has been rewritten in its entirety

Metadata templates library

Some sentences have been completed and an ISO reference has been added

Terms of use service

Some sentences have been completed and a NEN Standard reference has been added