Participants

DATE: 29-01-2024 STATUS: ADOPTED

This article gives an overview of the different (types of) participants in the Health-RI ecosystem and describes the way in which they relate to the Health-RI ecosystem based on the roles.

In this article, suggestions are also made as a first draft which roles specific participants could play in the Health-RI ecosystem. We would like to ask relevant parties and parties that do not recognize themselves in the participants to respond to this. In addition to further input from the Obstacle Removal Trajectory (OVT) regarding, the stakeholder analysis, this article will be further elaborated and finalized in subsequent versions.

The Health-RI ecosystem consists of a network of collaborating participants. There are different types of participants: for example, a healthcare organization is a different type of participant than a research organization.

The participant(s) and the way they relate to the Health-RI ecosystem are explained below, with the translation of the roles they perform in the Health-RI ecosystem.

Participant type	Implementation of the Health-RI ecosystem	Role(s)

Participant type	Implementation of the Health-RI ecosystem	Role(s)
Regional hub	see Nodes \| Regional hub	Data holder Data user
Nationwide node	see Nodes \| Nationwide domain node	Data holder Data user
Health-RI Foundation	Directing that the health data infrastructure for research and innovation will take place, by (a) initially laying down the (architecture) principles and managing them or having them managed, (b) informing participating participants about and stimulating them in the execution of their role, (c) being a mouthpiece in obtaining support and legislation for secondary use of healthcare data (d) encouraging partnerships that accelerate the usability of health data Providing a nationwide health data user environment for research and innovation Providing a nationwide health data holder environment for datasets that cannot be housed with other data holders. National Hub function for the international representation of the national data holders National coordination of health data research applications	Data holder Data user System Administrator Health-RI (initial) Research data request service
Healthcare organization	All healthcare providers, including academic hospitals, top clinical hospitals, regional hospitals, mental health organizations, long-term care, general practitioners, physiotherapy organizations, partnerships, etc.	A healthcare organization can itself be a node in the Health-RI ecosystem, fulfilling all roles concerning a data holder and/or data user, or can join a regional or nationwide node, where it only fulfills the role of data producer (with possibly the role of Local review committee data) and/or researcher and/or innovator, and/or healthcare professional with the role of Local review committee research.
Healthcare professional	Healthcare professional who provides care and thereby offer care data and/or purchase health data via the Health-RI ecosystem	Can produce the data at a data producer and/or act in the role of researcher and/or innovator, and /or healthcare professional
Register	A non-exhaustive list of examples is included below. The registries that apply to the Health-RI ecosystem are Basic registers Rvl: Basisgerister Personen KvK Basic Register of Persons Chamber of CommerceTrade Sectoral registers CIBG: National Register of Healthcare Providers UZI register of healthcare providers and care providers SURF: Register of research organizations Professional registers CIBG: BIG-register Patient registrations ZonMw patient registrations Quality registrations NKR: HIPEC registration Metadata Registry Health-RI: metadata catalog	(Identity) registries/ repositories
Citizen	Client or patient of a healthcare organization Subject in a study Citizen producing personal health data	Can produce the data at a data producer and/or act in the role of citizen
Research organization	Regional, national, and foreign research organizations	A research organization can be a node in the Health-RI ecosystem, fulfilling all roles concerning a data holder and/or data user, or can join a regional or nationwide node, where it only fulfills the role of data producer (with possibly the role of Local review committee data) and/or researcher and/or innovator, and/or healthcare professional with the role of Local review committee research.
Researcher	Researchers use tools from the Health-RI ecosystem to find existing health data for research, request it, generate their own data through Electronic Data Capturing Tools (EDCs), to analyze this data through a secure analysis processing environment. Researchers offer research results via Health-RI ecosystem for reuse.	Can produce the data at a data producer and/or act in the role of researcher or innovator
Personal Health Environment (PGO)	A PGO (1) Produces health data from, for example, health trackers, or questionnaires, (2) allows personal health data from other health data to be viewed by information systems and could also (3) store it as a duplicate. In addition, the citizen could also (4) obtain insights from the (national) health data infrastructure that concern the personal health situation of the citizen by means of proven algorithms.	A PGO can itself be a node on the Health-RI ecosystem, fulfilling all roles concerning a data holder and/or data user, or can join a regional or Nationwide node, where it only fulfils the role of data producer (with possibly the role of Local Review Committee data) and/or citizen.
(Quality) Data registry	A (Quality) data registry can initially be seen as a data source, with self-produced data and data produced elsewhere, which is made suitable for (multiple) use here. In the long term, if the sources of data produced elsewhere have themselves made the data suitable for multiple use, the data registry will be able to use these sources. To prevent duplicates in the system, the data registry will then only provide self-produced and aggregated data to the Health-RI ecosystem. For the specific focus area (disease) of the data registry, a specific research environment can be set up in which data can be found from various sources on a specific subject.	Initially Data holder. In the long term, if the sources of data produced elsewhere have themselves made the data suitable for multiple use, the data registry will be able to use these sources as a Data User.
RIVM and GGD	These parties themselves produce health data themselves and are interested in other health data sources for research. It must be examined how these parties will connect to the Health-RI ecosystem. This could be because they themselves will form a Nationwide node, or they could join regional nodes with regional activities	Self-Nationwide node Data holder Data user or Joining regional nodes, whereby it only fulfils the role of data producer (with the role of Local review committee data) and/or researcher and/or innovator with the role of Local review committee research.
Regional networks	Regional networks or Regional Cooperation Organizations (RSOs) are set up for health data interoperability of and for healthcare organizations. Data produced by the individual healthcare organizations can be made suitable for the Health-RI ecosystem through a regional node. Healthcare Professionals from the individual healthcare organizations can obtain insights from the (national) health data infrastructure themselves using proven algorithms to support the implementation of the health process. It is necessary to consider what the impact is if a regional network or RSO wants to form its own regional node on the Health-RI ecosystem in addition to existing regional nodes.	Connecting with existing regional nodes, whereby individual healthcare organizations themselves only fulfil the role of data producer (with the role of Local review committee providing data) and/or researcher and/or innovator with the role of Local review committee research. or Self-regional hub Data holder Data user
Commercial institutions	Commercial institutions can also produce health data and /or apply for research. They could connect to the Health-RI ecosystem with their own nationwidfe node, or connect via another node (Regional, nationwide, or the node of the Health-RI Foundation).	Self-Nationwide node Data holder Data user or Joining another node, whereby it only fulfills the role of data producer (with the role of Local review committee data) and/or researcher and/or innovator with the role of Local review committee research.
Service providers/ Technology initiatives	Organizations that provide specific role/ function as a service to the Health-RI ecosystem, for example. Preparing data for multiple use Central or federated analysis processing environments Research environments Or facilitate innovations that optimize health data interoperability	Specific roles such as Data Preparator Central analysis processing environment Applicant Federated Analysis Researcher
Disease specific domain communities	Have specialized condition specific domain knowledge	For condition specific domain contribute to Monitor unity of language Defining metadata templates Define and manage Defining mapping definitions Minimal (meta)dataset
Funders	Encourage/instruct participants to comply with the Health-RI ecosystem
Government	Government can (1) authorize parties to provide Generic features to the health data infrastructure, (2) amend laws to safely optimize multiple use of health data, (3) create public support for the learning care system and (4) finance health data interoperability as a utility.