Participants
The IDERHA project's multi-stakeholder workshop on the 31st of October 2023 gathered 10 experts from different initiatives regarding data access, sharing and integration, such as DARWIN EU®, EHDEN and Gaia-X.
Aims
The workshop aimed to provide insights into barriers and challenges to data access and sharing, their sensitivity to policy change, and discuss those most impactful and feasible for IDERHA to address. This is the first of several data stakeholder workshops seeking to incorporate lessons learned from similar projects for the development of policy recommendations related to health data access and sharing.
Key findings
- The most frequently cited challenges to data access and sharing were:
- Interoperability
- Uncertainty over legislation and governance
- Lack of a data sharing culture/lack of trust to share data.
- Legislation/governance issues and interoperability were perceived to be more sensitive to change through policy than attempting to enact culture change.
- When considering impact and feasibility, however, incentivisation, patient/citizen consent to data access, and increasing public spending on data sharing and access were prioritised.
- It will be important to consider the wider context of the European Health Data Space (EHDS) and previous lessons learned when considering areas for policy development.
Key recommendations and priority areas
- IDERHA should explore policy recommendations for creating standardised incentives, promoting data altruism, and establishing clear governance procedures including appropriate consent mechanisms. This includes incentivising public and private entities to share data while ensuring transparent and ethical practices.
- IDERHA should assess the feasibility of implementing policy recommendations and seek to tackle areas where this is most likely. These recommendations should emphasise harmonisation at EU, national, and organizational levels.
- IDERHA should establish and maintain strong links with the EHDS, to ensure ongoing work is complementary and avoids duplication of efforts. Exploring involvement in the EHDS2 Board and pilot and leveraging their reusable building blocks will enhance the project's impact and contribute to the broader European health data landscape.
Please find the full workshop report here.