Relevant initiatives in the healthcare, research and personal domain

datum: 14-08-2024 Status: FOR REVIEW

 

The basis of the Health-RI ecosystem is a federated network of centralized and decentralized components, which makes use of existing (inter)national initiatives. For the success of the Health-RI ecosystem, it is essential that its architecture is in line with these initiatives. The most relevant initiatives and the way in which they fit in with the Health-RI ecosystem are listed below in no particular order:

• CumuluZ: CumuluZ focuses on the realization of a infrastructure with which healthcare data can be shared securely; an initiative of care for care.

• DIZRA: DIZRA is the reference architecture for a sustainable information system in healthcare. The principles and role definitions of DIZRA and the DIZRA Interoperability Framework are leading in the creation of the Health-RI Architectural Design.

• EHDS: The European Health Data Space (EHDS) is a proposal from the European Commission to quickly and easily exchange medical data and give citizens access to their health data. To promote the secondary use of healthcare data, a cross-border infrastructure is being set up: HealthData@EU. The Health-RI Architectural Design is in line with EHDS by reusing the definitions and concepts from EHDS and including agreements for the realization of the national contact point for secondary use of electronic health data that is required for HealthData@EU.

• eIDAS: eIDAS is a regulation (including amendments) that promotes the use of electronic identification and trust services in the EU. This allows individuals and businesses to transact online and across national borders while ensuring a high level of security and data protection. The eIDAS expert group has drawn up an architectural framework with open standards, specifications and guidelines for the implementation of eIDAS.  The Health-RI Architectural Design is in line with eIDAS by reusing the definitions and concepts from eIDAS and the  open standards, specifications and directions from the underlying architecture framework for generic functions in the field of digital identity.

• Gaia-X: Gaia-X is a European initiative that aims to establish a federated data infrastructure that promotes data sovereignty, interoperability, security, trust and innovation. It aims to create a framework that enables European companies and organizations to use data responsibly and cost-effectively, while adhering to European values and regulations.

• HORA: HORA is the reference architecture for higher education. HORA describes, among other things, the research business function group. The Health-RI ecosystem uses HORA as the basis for its design.

• KIK-V: In the KIK-V program, chain parties in nursing home care work together on the basis of an agreement set to streamline the exchange of secondary data. KIK-V is the most concrete implementation of the Personal Health Train concept based on open standards in the Netherlands. The Health-RI ecosystem is in line with KIK-V by reusing, where possible, the appointment set and technological solutions resulting from the KIK-V program.

• MedMij:  MedMij focuses on the exchange of health data between the Healthcare Professional's system and the citizen's self-chosen personal health environment (PBL). This will make it possible to make health and research data available to citizens. Through a PBL, a citizen can collect and view information about studies that have used data about her/his health. For the exchange of information about research between citizens on the one hand and Healthcare Professionals and research organizations on the other, the Health-RI ecosystem is in line with the MedMij scheme. In addition, the Health-RI ecosystem adopts the concept of different types of Service Providers introduced by MedMij.

• Mitz: The Mitz program focuses on the development of a national consent facility (Mitz) in which citizens, Healthcare Professionals and healthcare providers can record, manage and consult consents for the exchange of healthcare data.  Mitz offers a solution that allows citizens to control who can see their data. This allows Mitz to give substance to the parts of the Module Generic features that deal with consent and control.  The Health-RI ecosystem anticipates the use of Mitz for centrally registering, managing and consulting consent for secundary use.

• Nuts: Stichting Nuts and the Nuts community focus on realizing a trust layer based entirely on open standards with which the internet can be used safely for sharing (special) personal data in and around healthcare. Nuts offers open standards and free open source software for the implementation of various parts of the Module Generic features. The free open source software from Nuts offers an accessible opportunity to give substance to the standards recommended by eIDAS for the implementation of generic functions in the field of digital identity.  The Health-RI ecosystem is in line with Nuts by choosing the open standards recommended from eIDAS for the implementation of  the trust layer required for the Health-RI ecosystem,  in the knowledge that Nuts offers free open source software for this if necessary.

• Personal Health Train: The Personal Health Train (PHT) is a concept for data-driven, decentralized research that aims to enable the safe and controlled use of health data for scientific research, while protecting the privacy and rights of the data subjects. The PHT concept is based on the idea of a "train", where each data provider is a station and the data and/or analytics travel between stations in a safe and standardized manner. The Health-RI Architecture design is in line with the Personal Health Train concept by reusing the FAI R data station concept.

• Registratie aan de bron: focuses on the development of semantic standards that form the foundation of unambiguous registration.  In the field of semantic standards for healthcare data, the Health-RI Architectural Design is in line with the results of the Registration at the Source program.

• Twiin: Twiin focuses on the exchange of healthcare data between (regional) nodes. Twiin describes various agreements for the implementation   of the Module Generic features, including the description of a trust model. The Health-RI ecosystem is in line with Twiin.

• VIPP Programma’s: VIPP stands for Acceleration Program Information Exchange Patient & Professional. VWS has set up VIPP programs for various healthcare sectors. The main objective of the VIPP programs is the exchange of standardized information between the healthcare institution and the patient and between healthcare institutions themselves. The VIPP programs have made widely supported agreements on how healthcare data should be structured and made available on the basis of open standards. In addition, many healthcare organizations have invested in systems that have implemented these agreements. The Health-RI Architecture Design is in line with the VIPP programs by reusing the agreements and systems resulting from the VIPP programs where possible.

• PLUGIN: PLUGIN (Platform for Exchange and Reuse of Clinical Data Netherlands) is an initiative of DHD, the Expertise Centre for Care Algorithms (EZA), and the Netherlands Comprehensive Cancer Centre (IKNL). The aim of the project is to make clinical data in the Electronic Patient Records (EPDs) of Dutch hospitals accessible for federated analysis while safeguarding the privacy of patients.

• TZW: Thesaurus Healtcare and Welfare. The Healthcare and Welfare Thesaurus is a terminology database of more than 50,000 terms from the healthcare sector, the social domain, but also other areas of life such as housing and education. With both technical language and more understandable variants of technical terms. The concepts in Health-RI correspond 1 to 1 with the concepts of the TZW.

• IZA: Integrated care agreement. The aim of the Integrated Care Agreement is to keep healthcare good, accessible and affordable for the future. To achieve this, agreements have been made between the Ministry of Health, Welfare and Sport and a large number of parties in healthcare. Signatories of the IZA include umbrella organizations of hospitals, mental health care and elderly care. The Health-RI ecosystem aims to be the engine of a learning healthcare system to achieve faster health improvement for citizens and patients. In this way, the Health-RI ecosystem contributes to the goals of the Integrated Care Agreement.

• NLAIC: Dutch AI Coalition. Health-RI is in contact with the NLAIC to investigate the possibilities of AI within the ecosystem.

• NVS: National Vision and Strategy for the health information system. The Health-RI ecosystem supports the objectives of the NVS.

• IDS-RAM: International Data Space Reference Architecture Model. Data sovereignty is a central aspect of the International Data Spaces. It can be defined as the ability of a natural or legal person to be completely self-determined with regard to its data. The International Data Spaces initiative proposes a reference architecture model for this specific capability and related aspects, including requirements for secure and trusted data exchange in business ecosystems.

• HDAB-NL: This four-year programme develops technical functionalities for a coordinating Health Data Access Body (HDAB). An HDAB ensures secure access to health data for scientific research, innovation and policy. The programme helps Dutch parties to join TEHDAS2 and to prepare for components of the upcoming European Health Data Space (EHDS) regulation. VWS is responsible for the project organisation. ICTU, Statistics Netherlands (CBS), Health-RI and the National Institute for Public Health and the Environment (RIVM) have been asked to investigate the functionalities of a Dutch HDAB. In this project, the roles of the Central Assessment Committee for Data Offering and Data Research Request Service in work package DAAMS, the Data Guide in work package Catalogue and Central Analysis Processing Environment in work package Secure Process Environment (SPE) are being elaborated.

• GDI: Genomic Data Infrastructure. The Genomic Data Infrastructure (GDI) project enables access to genomic and related phenotypic and clinical data across Europe. This is done by setting up a federated, sustainable and secure infrastructure to access the data. It builds on the results of the Beyond 1 Million Genomes (B1MG) project and realizes the ambition of the 1+Million Genomes (1+MG) initiative. Health-RI is involved in this project to connect the omics activities internationally. See also this article.

• EUCaim: The EUropean Federation for Cancer IMages (EUCAIM) project aims to make the power of medical images and artificial intelligence accessible to patients, clinicians and researchers and is one of the key components of the European Cancer Control Plan. Health-RI's main involvement lies in the implementation of the central hub.

• Quantum: QUANTUM (Quality, Utility and Maturity Measured) is a 3-year (2024-2026) Horizon Europe-funded project aiming at developing a quality and usability label for secondary uses of health data in the EU. Health-RI is co-leading the Demonstrators work package, which implements and tests the developed quality labels with representative data holders across Europe.

The above initiatives together form a rich toolkit, large parts of which can be reused to give substance to the architecture required for the Health-RI ecosystem. In the next section, a start is made with concretizing the modular design in line with the above initiatives.