What are the implications for patients?
The primary goal of the EHDS is to empower patients to access their health data and enable health professionals to consult patients’ medical records, through Electronic Health Records (EHRs). It will enable citizens in the EU to access, manage, and share their health data electronically (primary use), and facilitate its use for public interest, policy making, and research (secondary use).
To ensure a successful enforcement of the regulation and mitigate any unintended consequences, we call on Member States and the European Commission to prioritise the following key actions during the implementation period:
- Accessibility and Usability: EHR systems must be user-friendly, with clear interfaces.
- Transparency: Patients should have transparent information in lay language on how their health data is collected, stored, used, and protected within the EHDS framework.
- Consent: It is crucial to provide patients with complete information on the opt-out mechanism from the re-use of health data for secondary purposes.
- Digital Health Literacy: It is essential to continue promoting digital health literacy programmes, especially in underserved and rural communities.
- Stakeholder Engagement: The EHDS stakeholder forum should function as a true advisory board, whose feedback and recommendations are actively incorporated and acted upon.
- Financial Considerations: Addressing concerns about the financial burden on Member States and regions is crucial for sustainable implementation.
- Security and Privacy: Ensuring state-of-the-art security measures to strengthen the protection and cybersecurity surrounding data storage and processing is of utmost importance.
- Minimising Legal Uncertainty: It is critical to reduce legal uncertainties surrounding the implementation of EHDS.
Lynch Syndrome Ireland 