Patient Engagement

Session Chairs

Sofie Bekaert, Manager Translational Program & Head of Communications Strategy (VIB)

Richard Stephens, Patient Advocate (BBMRI-ERIC)

Speakers and Presentations  

• Krista Bracke, Patient Expert (University Hospital Ghent) - "PID-Project"  
• "PID translational research: from bed to bench and back again"
• Ulrike Felt, Professor (University of Vienna) - "If public engagement is the solution, then what is the problem with biobanking?"  
• Anna Clareborn, Project Manager (Biobank Sweden) & Eskil Degsell, Patient and Next of Kin representative (Swedish Braintumour Association, Karolinska University Hospital, Regional Cancer Center and KI) - "Collaborating with Patients and Next of Kin: Towards a Culture of Equal Partnership"
  

Session Information

Patients’ perspectives are valuable to researchers, as they help ensure that the research questions are relevant to patient and public benefit, that studies recruit to time and target, that results are promoted and shared, and that patients of the future are encouraged and supported to participate in research where possible, including donating samples and data.  This year’s session on patient engagement will focus on advancing towards creating an overarching Trusted Research Environment with a specific emphasis on rare diseases, paediatrics and cancer. We invite contributions and participation, particularly from patient advocates and groups, from researchers who are working closely with them.