Health data

Health data plays a substantial role in the European Union’s strategic, legislative, and funding initiatives in the health domain.

As hematology is at the forefront of medical innovation, health data constitutes a key topic in EHA’s interaction with European policymakers, regulators, and other stakeholders.

EHA participates in collaborative health data and eHealth initiatives, and advocates for appropriate health data policies, regulatory approaches, and infrastructures. We do this to:

  • Improve access to innovative therapies
  • Support hematology research
  • Advance Personalized Medicine

A major target of our advocacy has been the European Health Data Space regulation, adopted in 2024.

EHA Strategy for Health Data

Given the importance of health data for hematology, EHA’s Board approved a strategy in April 2022 that features eight complementary and interlinked strategic goals:

Goal 1: Need for sustainable, representative, high-quality data structures and data sources to facilitate research and education and allow timely regulatory and improved clinical decision making

Goal 2: Transparent, inclusive, and ethical use of novel analytical tooling for evidence generation

Goal 3: Promotion of FAIR data principles (Findability, Accessibility, Interoperability, and Reuse)

Goal 4: Implementation of Personalized Medicine

Goal 5: Harmonization of real-world data (RWD)

Goal 6: Align with, link into and influence, where possible, strategic European initiatives on health data

Goal 7: Empowerment of patients in data generation, sharing, analysis, and ownership

Goal 8: Support for existing, centralized data repositories of strategic importance to EHA/hematology for long-term sustainability

Health Data Steering Group

EHA’s work on health data is guided by its Health Data Steering Group (HDSG), which includes a patient representative. The HDSG is tasked with:

  • Advising the EHA Board on health data matters relevant to hematology practice, research, and education
  • Overseeing the implementation of the strategy
  • Advising on interpretation of the strategy (including within the context of European Affairs work)

EHDS Resources