A coalition of 39 representatives from the EU health community, including industry groups, patient associations, and scientific organizations, has urged EU policymakers to establish a formal participation forum for the European Health Data Space (EHDS). The proposal aims to ensure a structured engagement process in this evolving healthcare data ecosystem.
The coalition, which includes organizations such as the European Federation of Pharmaceutical Industries and Associations (Efpia), the Association of the European Self-Care Industry (Aesgp), the European Society for Medical Oncology (ESMO), and the European Lung Foundation, welcomed the official publication of the EHDS framework in the EU Official Journal. However, they emphasized that formal stakeholder involvement and best practice exchanges will be crucial for the EHDS’s success and long-term viability.
A Collaborative Approach to EHDS Implementation
The proposed forum would bring together a wide range of stakeholders, including citizens, civil society organizations, healthcare professionals, scientists, academics, healthcare providers, insurers, industry representatives, and patient advocacy groups. The coalition believes that such a collaborative approach will enhance trust, acceptance, and efficiency, accelerating the adoption of EHDS initiatives across member states.
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For effective operation, the forum should be a formal platform representing all stakeholders and should receive adequate resources to function efficiently. The group suggests that meetings should be held at least four to six times a year, either online or in person, to facilitate continuous dialogue, exchange best practices, and provide feedback on EHDS implementation.
Transparency and Accountability Measures
Transparency is a key concern for the coalition. They propose developing Key Performance Indicators (KPIs) to monitor and evaluate EHDS implementation. This would ensure clear accountability and effective performance tracking. Additionally, the forum should adopt targeted engagement strategies for different stakeholder groups to capture diverse perspectives and prevent the exclusion of valuable input.
To enhance public trust and engagement, the coalition recommends complementing the forum with regular public consultations on key EHDS decisions and policies. This approach would promote transparency, foster broader public confidence, and encourage a more inclusive decision-making process.
Ensuring Sustainable Funding for EHDS Implementation
A key condition for the forum’s success is sustainable EU funding to support training, capacity building, and regulatory compliance across member states. The coalition warns that unequal financial support could lead to disparities in EHDS implementation and limit equitable access to health data. They suggest leveraging existing EU programs like EU4Health to ensure balanced funding across all nations.
Best Practices from EU Agencies
The coalition urges the EU to adopt transparency measures similar to those used by agencies like the European Medicines Agency (EMA) and the European Food Safety Authority (EFSA). Specifically, they recommend:
- Publishing meeting agendas and governing documents in advance.
- Promptly sharing meeting minutes and key decisions.
- Considering live streaming important discussions to increase public accessibility.
Defining Internal Regulations for Effective Engagement
Finally, the coalition stresses the importance of formal internal regulations that guarantee meaningful and regular exchanges between the EHDS governing board and the stakeholder forum. They call for public disclosure of the board’s responses to forum recommendations, ensuring that stakeholder input is genuinely reflected in the EHDS regulatory framework.
By advocating for a structured, transparent, and well-funded participation forum, the coalition aims to strengthen EHDS governance and maximize its potential to improve healthcare data accessibility and innovation across Europe.
This article is originally published on /diariofarma.com
