Health stakeholders advocate for enhanced collaboration in European Health Data Space (EHDS) implementation 

The Association of European Cancer Leagues (ECL) has joined a coalition of 39 leading representatives from the European health community to publish a joint statement welcoming the publication of the European Health Data Space (EHDS) regulation in the EU’s Official Journal. The group underscores the need to promptly establish an inclusive and well-resourced Stakeholder Forum to ensure the effective implementation of the European Health Data Space (EHDS).

5 March 2025

The Stakeholder Forum is envisioned as the cornerstone of the collaborative effort to successfully implement the EHDS, providing a platform for diverse voices to engage in meaningful dialogue. A collaborative approach that includes citizens, civil society, healthcare professionals, scientists, academia, healthcare providers, payers, industry stakeholders, and patient representatives will foster trust and contribute to the acceptance, effectiveness, and rapid adoption of EHDS initiatives. The coalition is calling for early and sustained investment in the Forum’s operations, including measures to promote inclusivity, transparency, and actionable contributions. 

Key recommendations include: 

  1. Promptly set up the Stakeholder Forum: 
  • Allocate sufficient resources for its operation. 
  • Ensure representation from diverse stakeholders and foster regular, transparent dialogue. 
  • Develop use cases and Key Performance Indicators (KPIs) to monitor implementation progress and accountability. 
  • Complement the Forum’s efforts with open public consultations to build broader trust. 
  1. Invest in capacity building and funding: 
  • Support cross-border knowledge exchange and training in data governance and digital literacy. 
  • Ensure equitable and sustainable funding for EU member states, enabling all stakeholders to align with EHDS standards and regulations. 
  • Maintain, and where possible, increase ongoing funding through initiatives like EU4Health to support the EHDS implementation. 
  1. Promote transparency in the EHDS Board: 
  • Establish and agree on clear principles of transparency for the EHDS Board. 
  • Publish meeting agendas, papers, and minutes promptly, and consider webcasts, leveraging best practices from EU agencies. 
  • Define procedures for regular consultation with the Stakeholder Forum and ensure feedback is integrated and reflected into the work of the Board.  

The group reiterates its commitment to active and constructive collaboration with policymakers. By embedding transparency, inclusivity, and robust capacity building into the EHDS framework, Europe has the opportunity to create a health data ecosystem that enhances healthcare outcomes and solidifies the EU’s leadership in digital health innovation. 

Click here to read the full statement