In today’s rapidly evolving healthcare landscape, the ability to access, integrate, and analyze health data is crucial for advancing patient care and medical research. However, significant obstacles remain in this process. IDERHA was established to address these challenges and pave the way for more efficient and effective use of health data across Europe.
Public Consultation Goals
IDERHA has identified ten key thematic areas where policy recommendations could significantly improve health data utilization. Through public consultation IDERHA aims to:
- Validate Findings: Share and confirm the importance of IDERHA's initial findings on ten thematic areas related to health data sharing, access, and use.
- Explore Consent Factors: Understand which aspects of “factors influencing consent for secondary use of data” are most important to stakeholders, informing IDERHA’s immediate next steps.
- Identify Existing Work: Explore ongoing initiatives outside of IDERHA to help prioritize areas of focus and avoid duplication of efforts.
- Prioritize Future Actions: Determine which of the ten thematic areas are most crucial to stakeholders, guiding IDERHA's future priorities.
Thematic Areas
Our ten thematic areas were formed through consultation with several different types of stakeholders including patients, patient advocates, diversity and inclusion advocates, Data Protection Officers (DPOs), Information Governance Officers and representatives from established data-sharing initiatives:
- Aligning national and EU-wide legal frameworks and establishing common interpretations and standards
- Improving data management and access procedures
- Engaging with the public and promoting health and data literacy to enhance trust in data-sharing initiatives
- Establishing and maintaining high data security measures
- Following an ethical framework for data-sharing and use
- Improving semantic interoperability
- Allocating sufficient resources for the implementation and sustainability of data-sharing initiatives
- Creating standardized incentives for data-sharing
- Exploring consent mechanisms
- Establishing a network for data-sharing initiatives to leverage alignment and synergies
Of particular interest is the sub-theme focusing on factors that can influence consent to share health data for secondary use. IDERHA seeks to understand stakeholders’ perspectives on this crucial aspect of data sharing. With the upcoming European Health Data Space (EHDS) regulation, the role of consent, both that of patients, but also data holders, is expected to play a crucial role in shaping the future of health data sharing.
Crucial Dialogue
This consultation represents a unique opportunity for stakeholders across the healthcare spectrum – from patients and healthcare providers to researchers and policymakers – to help influence the work of IDERHA with the goal of supporting future health data integration in Europe.
IDERHA invites all interested parties to participate in this crucial dialogue. Your input will play a vital role in developing our ongoing work to develop recommendations that may transform how we use health data to improve patient outcomes and advance medical research in the future.
You can find more information on our Public Consultation page, or you can go directly to the survey.