IDERHA Public Forum Webinar on Best Practices in Patient Engagement

As the final online event of the IDERHA 2026 Public Forum, the European Patients’ Forum (EPF) and Lung Cancer Europe (LuCE) will host a joint webinar exploring lessons learned from patient engagement activities within the IHI-JU IDERHA project.

Taking place on 12 November 2026 from 14:00 to 15:30 CET, the webinar will bring together patient organisations, patient advocates, and individuals interested in research participation to reflect on what makes patient engagement meaningful, effective, and sustainable in large European research initiatives.

Event Information

Title: Best Practices in Patient Engagement: Lessons Learned from the IHI-JU IDERHA Project
Hosts: European Patients’ Forum (EPF) and Lung Cancer Europe (LuCE)
Date: 12 November 2026
Time: 14:00 to 15:30 CET
Format: Online webinar (90 minutes)
Audience: Patients and patient organisations

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Learning from Five Years of Collaboration

Over the past five years, the IDERHA project has brought together 32 partners from 11 EU Member States to advance innovation in lung cancer care. Throughout the project, patient engagement has been a central component, ensuring that patient perspectives contribute to decision-making, research activities, and project governance.

Drawing on this experience, EPF and LuCE will share practical insights into how patient involvement was designed and implemented within a complex multinational consortium. The webinar will examine the structures, resources, and processes that made participation possible, while also addressing challenges encountered and the adaptations introduced along the way.

With the webinar, we aim to:

• Provide an overview of the patient engagement approach developed within IDERHA.
• Share practical lessons on the structures, processes, and conditions that support meaningful participation.
• Reflect on implementation challenges and how they were addressed.
• Facilitate exchange between patient organisations on their own engagement experiences.
• Identify practical insights that participants can apply in future research projects and consortia.

Participants will gain a deeper understanding of both the opportunities and challenges associated with patient engagement in European research. The event is expected to promote the exchange of practical experiences, support future collaborations, and help ensure that the lessons and resources developed through the IDERHA Public Forum continue to benefit the wider patient community.

Program

The webinar is devided into two parts:

Part I: Presentation

Speakers will present the IDERHA patient engagement model, including:

• The role and contribution of the Patient Advisory Board (PAB)
• Links between patient representatives and project governance structures
• Approaches to participation, support, and compensation
• Key enablers of successful patient engagement
• Challenges encountered during implementation and lessons learned

The presentation will also feature a testimonial from a Patient Advisory Board member, providing a first-hand perspective on participating in a major European research project.

Part II: Interactive Exchange

The second half of the webinar will provide an opportunity for participants to share their own experiences and discuss:

• What enables meaningful engagement in research
• Common barriers to participation
• Lessons learned from other projects and organisations
• Practical actions that can strengthen future research collaborations

The interactive format is designed to encourage peer learning and open discussion among patient organisations across Europe.

Confirmed speakers

• Bianca Pop - Senior Programme Officer (EPF)
• Anna Keuchenius - AI and Community Insights Lead (LuCE)
• Arlet Viader - Capacity Building Officer (EPF)
• More speakers to be confirmed

A recording of the webinar will be made available after the event through the EPF YouTube channel and the LuCE Digital Learning Hub for members.

We look forward to welcoming patient advocates and organisations from across Europe for this important discussion on strengthening patient engagement in research.

Click here to register