IDERHA’s workshop series kickstarts with patients leading the way

The inaugural workshop brought together eight members of the public who belong to three of IDERHA’s patient organisation partners, the European Cancer Patient Coalition, Lung Cancer Europe, and the European Patient’s Forum. The decision for the first workshop to be patient focused, reflects the importance of patient input in IDERHA.  Patient voice will be a major part of the development of consensus on policy recommendations around ethical and legal governance of heterogeneous health data access and sharing.  

During the workshop, participants received an introduction to the IDERHA project, gaining insights into how the project aims to change how health data can be used in the future for patient and research benefit. Workshop participants were encouraged to discuss their opinions on IDERHA’s objectives and express any potential concerns they may have. 

This event serves as the launchpad for a series of forthcoming workshops with other key stakeholders, including those with experience of being involved in health data initiatives, and regulatory and heath technology assessment organisations. 

The feedback from these workshops will be anonymised and published publicly on the IDERHA website in due course. The insights generated will be provided to a new advisory council, the Integrated Data Access Governance Council (IDAGC) that is currently in the process of being established as part of the IDERHA project. The IDAGC will play a pivotal role in shaping the future focus areas of policy development, ensuring that IDERHA's efforts remain aligned with policy consensus building for the next four years.   

IDERHA is currently seeking nominations for leaders across the healthcare system to join the IDAGC. If you are interested in nominating yourself or someone else, please visit the IDERHA website for more information. The closing date for nominations is 2 October 2023.