Participants
The IDERHA project's inaugural multi-stakeholder workshop held on the 14th of September 2023, gathered nine participants from the public representing IDERHA's patient organisation partners: European Cancer Patient Coalition (ECPC), Lung Cancer Europe (LuCE), and European Patients’ Forum (EPF). These participants, from across Europe, including France, Greece, the Netherlands, Romania, Slovakia, Spain, Turkey, and the UK, had varied backgrounds and experiences, with some directly affected by cancer.
Aims
The workshop aimed to provide valuable insights into participants' understanding of health data, concerns about data fragmentation, and their willingness to share health data. It highlighted the significance of patient data privacy, security, and data literacy, and the need for clear communication. The workshop laid the foundation for future discussions on topics such as data quality, AI tools, and consent, ensuring a collaborative approach within the IDERHA project. This is the first of several workshops seeking patient engagement and is part of the project's commitment to incorporating the patient perspective in developing policy recommendations related to health data access and sharing.
Key findings
The IDERHA patient workshop revealed valuable insights into participants' perspectives on the project and health data in general. It highlighted the diverse nature of health data, emphasising its significance for individuals dealing with rare diseases and the need for comprehensive, yet understandable communication about data collection and consent. The participants' concerns revolved around data fragmentation, security, and the legislative framework to protect patient rights and privacy. They recognised the potential benefits of the IDERHA project but stressed the importance of privacy, trust, and data literacy in ensuring its success. This workshop provided a platform for patients to voice their views and identified key areas, such as data quality, AI tools, and consent, for future discussions and collaboration.
Key recommendations and priority areas
The following recommendations could address key concerns raised by workshop participants and should be considered within the IDERHA project:
- Strengthen data privacy and security measures: Prioritise robust data security measures to protect patients' rights and privacy. This includes implementing legislative frameworks to govern health data access, sharing, and consent. Building trust among individuals and communities is crucial for ensuring public and patient willingness to share their health data.
- Improve data literacy and communication: Recognise the importance of clear and plain language communication to enhance data literacy among the general public. Raising awareness about the benefits of sharing health data and dispelling misconceptions about data collection can foster greater public support for data sharing initiatives.
Please find the full workshop report here.