News
Public Forum
As part of IDERHA's ongoing outreach activities and transparency commitments, we organize a number of activities for specific stakeholders to share our progress, address concerns, and answer questions.
We appreciate the sensitivity of data use, data access and data sharing in health care, and we commit ourselves to involve all stakeholders, especially the public, in our research and policy recommendations. Under the umbrella of IDERHA Public Forum we organize webinars, live meetings, workshops, panel discussions, and lectures to share our progress, address concerns, and answer questions.
2026
Upcoming events
2 - 4 June in Seville at the Patient Engagement Open Forum (PEOF)
- Christian Muehlendyck, Nadja Kartschmit, Gözde Susuzlu Briggs, George Sargiotis (IDERHA PAB member) and Bianca Pop will host an IDERHA session and panel discussion titled: "From Policy to Practice: Unlocking the Secondary Use of Health Data''.
5 - 9 September in Barcelona at the ERS Annual Congress
IDERHA will be part of a studio session titled: "How better access to lung cancer patient data can have a major impact for clinical research & patient outcome".
- Phil Gribbon: IDERHA: A federated data space to improve clinical research & patient outcome
- Rebecca Rancourt: A case study how data connectivity can enhance lung cancer screening
Looking back at our Public Forum activities of 2026 so far
22 - 24 April in Vienna at the LuCE Conference
Nadja Kartschmit and Omnia Bilal spoke at the LuCE Conference and had strong engagement throughout their presentations and breakout session. They felt it was especially rewarding to connect with many current and former IDERHA Patient Advisory Board and Clinical Advisory Board members.
"Large data sharing initiatives are more likely to succeed when patients and patient representatives are meaningfully included as partners." - Nadja Kartschmit
During the session, Nadja and Omnia explored the concept of real-world data and how it is used across research, clinical decision-making, and regulatory and HTA processes. They also introduced the European Health Data Space (EHDS) and discussed what it could mean for patients, particularly in terms of access to and use of their health data.
The breakout activity provided valuable insights into patient perspectives on how health data is used to improve research and outcomes in lung cancer. Initiatives like IDERHA play a key role in overcoming some of the barriers.
7 May at the Patient Engagement Open Forum (PEOF)
- Heather Colvin, Omnia Bilal, Gözde Susuzlu Briggs and Bianca Pop presented a virtual session titled: "Your Data, Your Evidence: The Patient Journey in Real-World Evidence"
Podcast episode from European Patients' Forum featuring IDERHA
In the podcast episode, Bethany Shinkins and Ine Vandersmissen discuss the growing role of real-world data and real-world evidence in healthcare decision-making.
The conversation explores:
🔹 Why traditional clinical trials do not always reflect the full diversity of patient experiences
🔹 How real-world evidence can complement existing research
🔹 What is needed to build trust in the use of heterogeneous health data
🔹 The recommendations developed within the IDERHA project to support the acceptance of real-world evidence in regulatory and HTA decision-making
2024 & 2025
In the first two years of the IDERHA project we organized two live meetings. The first Public Forum live event was on 15 April 2024, the second Public Forum live event was on 5 May 2025, both at the Fraunhofer Forum in Berlin. Topics that were discussed include:
- The use of AI across the care pathway
- The technical challenges of appropriately integrating health care data to drive innovation and research
- How we are working to shape policies to meet the needs of the future