Principles
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We want to empower healthcare organizations to harness the full potential of routinely collected data while prioritizing security, ethics, and human-centric innovation, driving advancements in patient care, research, and health systems.
FAIR Data
Section titled “FAIR Data”The project aligns with FAIR principles, that emphasize machine-actionability. Machine-actionability is the capacity of computational systems to find, access, interoperate, and reuse data with none or minimal human intervention.1
As data volume, complexity, and creation speed continue to grow, people increasingly rely on technological support to manage and utilize data effectively. While the SPECTRE-HD project places a strong emphasis on technology, it equally acknowledges the critical importance of fostering an optimized interplay between technology, people, and processes.
Data and Data Governance as First-Class Citizens
Section titled “Data and Data Governance as First-Class Citizens”- List of “Shoulds” 2
Open-Source Foundation
Section titled “Open-Source Foundation”- Promote transparency, community collaboration, and innovation through the use of open-source software, ensuring accessibility and adaptability for healthcare organizations worldwide.
Local-First Design
Section titled “Local-First Design”- Prioritize data sovereignty by allowing healthcare organizations to store and process data locally if preferred, ensuring compliance with local regulations and addressing privacy concerns.
- Although the ultimate goal is to optimize the sharing and reuse of healthcare data, SPECTRE-HD partners will not share their hospital’s data during the project.
- In the pilot project, hospitals will test-drive the local Rare Diseases registry.
Portability
Section titled “Portability”- Enable seamless deployment across diverse environments, whether on-premises or cloud-based, empowering organizations to choose infrastructure that aligns with their needs and capabilities.
- https://dlthub.com/blog/portability
Integration with Open Standards
Section titled “Integration with Open Standards”- By building on open formats (Iceberg, Parquet) and industry standards (S3), we ensure compatibility and avoid vendor lock-in (vendor-agnostic). Your data remains portable and accessible, giving you the freedom to choose the best tools for your needs.
Security and Privacy by Design
Section titled “Security and Privacy by Design”- Embed robust security and privacy safeguards at every stage, from development to deployment, ensuring that patient data remains protected and compliant with global privacy standards.
- Five Safes & SATRE framework
- DPIA for each solution
EHDS Alignment
Section titled “EHDS Alignment”- Data access is granted only in response to an approved data request (in the hospital) or a data permit (in EHDS), ensuring ethical and controlled reuse of health data.
Scalability and Future-Readiness
Section titled “Scalability and Future-Readiness”- Design systems to accommodate the growing volume, complexity, and diversity of healthcare data, future-proofing against technological and regulatory changes.
Multi-Modal Data Management
Section titled “Multi-Modal Data Management”- Support integration and management of diverse data types, including structured data (e.g., lab results) and unstructured data (e.g., clinical notes, imaging), to unlock the full potential of healthcare information.
Metadata-Driven Discovery
Section titled “Metadata-Driven Discovery”- Ensure all data is paired with rich metadata, making it discoverable, interpretable, and reusable by researchers and clinicians while maintaining context and clarity.
People and Process-Centric Technology
Section titled “People and Process-Centric Technology”- Align technological solutions with human workflows and organizational processes, fostering a symbiotic relationship between innovation and operational efficiency.
Interoperability and Standardization
Section titled “Interoperability and Standardization”- Adhere to global and regional data standards (e.g., FHIR, HL7, DICOM) to ensure seamless data exchange and collaboration across systems and organizations.
Ethical Data Stewardship
Section titled “Ethical Data Stewardship”- Commit to the responsible use of data, ensuring ethical considerations guide every aspect of data sharing, reuse, and analysis.
Robust and Inclusive Governance
Section titled “Robust and Inclusive Governance”- Engage diverse stakeholders, including patients, clinicians, researchers, and policymakers, to co-create data policies and practices that reflect shared priorities and values.
- We embed governance directly into data pipelines through semantic data contracts and role-based access controls. This means you can move fast without sacrificing compliance or data quality.2
Sustainability and Cost Efficiency
Section titled “Sustainability and Cost Efficiency”- Optimize resource utilization and minimize costs, ensuring that healthcare organizations of all sizes can participate without financial barriers.