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Related initiatives

When building the architecture, all documentation of the referenced initiatives are considered.

Trust Frameworks

Trusted Exchange Framework and Common Agreement

The Trusted Exchange Framework and Common Agreement (TEFCA) is a United States initiative that establishes a nationwide trust framework for health data exchange. It defines common governance, legal agreements, and technical principles that enable different health information networks to securely connect and share data. TEFCA provides a structured and explicit model for trust, with clearly defined roles, onboarding processes, and conditions for participation across a federated ecosystem.

European Health Data Space

The European Health Data Space (EHDS) is a European Union initiative that establishes a common framework for the access and exchange of electronic health data across member states. It supports both primary use of data for healthcare delivery and secondary use for research, innovation, and policy-making. Within EHDS, the MyHealth@EU infrastructure enables the cross-border exchange of health data for direct patient care, defining common standards, governance, and operational processes. Compared to TEFCA, EHDS is broader in scope and more strongly embedded in legislation, combining legal, organisational, and technical foundations to enable interoperable data sharing.

Landelijk vertrouwensstelsel

In the Netherlands, a national trust framework (landelijk vertrouwensstelsel) is being developed to enable secure and reliable exchange of health data across organisations. It defines the agreements, roles, and conditions under which parties can trust each other, including identity verification, authentication, authorization, and compliance with legal and security requirements. Similar to TEFCA, it focuses on establishing explicit trust relationships, but is more nationally scoped and closely aligned with existing healthcare infrastructure and governance models.

Terminology and semantics

SNOMED CT

SNOMED International maintains the most comprehensive clinical terminology, covering diseases, procedures, findings, and more. It enables detailed, computable clinical data and is widely used in national health systems. Strong but complex to implement and maintain.

ICD (ICD-10 / ICD-11)

World Health Organization maintains a global standard for disease classification, mainly used for reporting, statistics, and billing. Less granular than SNOMED CT, but universally adopted and essential for comparability across countries.

LOINC

Regenstrief Institute maintains a standard for laboratory tests and clinical measurements. Critical for lab interoperability and widely adopted globally, often used alongside SNOMED CT.

FHIR Terminology Services

HL7 International maintains the terminology services which determines how terminology systems are used in practice (e.g. value sets, code systems, mappings). Provides APIs for validation, lookup, and translation. Increasingly the operational layer for semantics.

Integrating the Healthcare Enterprise

Integrating the Healthcare Enterprise (IHE) is an international initiative that develops practical guidance for implementing interoperability in healthcare systems. Rather than creating new standards, IHE defines integration profiles that specify how existing standards should be used together to support real-world use cases. These profiles describe workflows, roles, and technical interactions between systems, helping vendors and organisations implement interoperable solutions in a consistent and testable way.

eHealth Network / EHDS

European Commission maintains the eHealth Network which defines common datasets (e.g. patient summary) and required terminologies for cross-border care. Focuses on harmonisation across countries, not creating new terminologies.

OpenEHR archetypes

The OpenEHR Foundation maintains the OpenEHR archetypes which defines clinical models (archetypes) with embedded semantics. Strong for structured clinical data, but less globally dominant than SNOMED/LOINC.

Regional Reference Architectures

Sigra's Regional Reference Architecture

While focused on the region of Amsterdam in the Netherlands, many of the architecure is inspired by the regional reference architecture of Sigra where data availability is desired for public health and wellbeing. The reference architecture uses a similar structure and base components to then adapt it to the needs of the Caribbean region.

Hospital Reference Architecture (ZiRA)

While focused on an architecture for hospitals in the Netherlands, many reference architectures (e.g., Sigra) is based on the principles and capabilities described in the ZiRA.

Digital Public Infrastructure Digital Public Infrastructure (DPI) is an WHO initiative and refers to foundational, interoperable digital systems—such as digital ID, payments, and data exchange—that enable essential public and private services at scale.

Digital Public Infrastucture for Health Digital Public Infrastructure for Health is an WHO initiative and refers to foundational, interoperable digital health systems—such as data exchange—that enable essential health services at scale.

Digital health platform handbook: building a digital information infrastructure (infostructure) for health

World Health Organization, & International Telecommunication Union. (2020). Digital health platform handbook: building a digital information infrastructure (infostructure) for health. World Health Organization.

Projects

Paving the Pan American Highway for Digital Health

Initiated by the Inter-American Development Bank (IND) and the Pan American Health Organization (PAHO), the general objective is to provide high-quality, safe, and efficient digital healthcare services in the region and to strengthen regional resilience to epidemics and public health emergencies through the creation of the Pan American Route for Digital Health. The specific objectives are (i) to establish a harmonized legal framework and acquire the necessary regional digital infrastructure for cross-border data exchange; (ii) to improve national preparedness for implementing cross-border digital health services; and (iii) to empower individuals to consult and share their medical data, giving them greater control over their health.

Carribbean Connect

Doane, D., Kanjee, A., & Nelson, J. (2024). Report Caribbean Connect: Building the Pan-American Highway for Digital Health. https://doi.org/10.18235/0013204

Cross-border health services within the Caribbean

The Caribbean Public Health Agency (CARPHA) is the regional public health body for Caribbean Community Member States, established to strengthen and coordinate public health across the region. It brings together multiple former regional institutes into a single organisation, enabling a unified response to public health challenges such as infectious disease outbreaks, non-communicable diseases, environmental health risks, and emergencies. CARPHA supports member states through surveillance, laboratory services, research, and capacity building, including regional laboratory networks and medicines quality control. Through these activities, CARPHA plays a key role in enabling regional coordination, data sharing, and evidence-based decision-making, which are essential for cross-border health collaboration.

Reports on global barriers for interoperability

The Global Digital Health Partnership (GDHP) is an international collaboration of governments and health authorities that works to advance digital health through shared learning and alignment on best practices. In the area of interoperability, GDHP has produced key reports such as Advancing Interoperability Together Globally and Connected Health: Empowering Health through Interoperability. These reports outline common challenges, guiding principles, and practical approaches for enabling data exchange across health systems, with a strong emphasis on standards adoption, governance, and real-world implementation. Through this work, GDHP supports countries in aligning their digital health strategies while accommodating different levels of maturity and promoting a globally coordinated approach to interoperability.