Participants

Regional hub

 see Nodes | Regional hub

• Data holder 

• Data user

Nationwide node

 see Nodes | Nationwide domain node

• Data holder 

  Data user

Health-RI Foundation

1. 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

2. Providing a nationwide health data user environment for research and innovation

3. Providing a nationwide health data holder environment for datasets that cannot be housed with other data holders.

4. National Hub function for the international representation of the national data holders

5. 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 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

• Secure 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.