On 21 August, Dr Lorena Arranz, Deputy Centre Director at CRESCO, together with Dr. Anita Kavlie, National Coordinator of EATRIS Norway, hosted the first Patient Day at MIK/CRESCO, bringing patient representatives and patient advocates, infrastructures, and researchers into the same room to explore how patient involvement can be strengthened across all stages of research.
The morning program focused on experiences with patient involvement in both basic and clinical research, on how collaboration can shape project design, clinical trials, and communication of results.
- We listened to valuable patient voices from representatives from Kreftforeningen, Blodkreftforeningen and Blærekreftforeningen.
- Patient advocates were represented by the Acute Leukemia Advocates Network.
- Researchers at the University of Oslo and Bærum Hospital provided their point of view into the topic and own experiences.
The resource session highlighted key national and European initiatives:
- FHI on patient engagement in medical devices.
- EUPATI and their training of patient experts and open classroom resources.
- Forening for sjeldne Neuroutviklingslidesler on the role of rare disease patient organisations in collaboration and data sharing, and their use of resources.
- EATRIS, introducing the Patient Engagement Resource Centre (PERC).
- REMEDi4All on drug repurposing with strong patient involvement at its core, and a concierge service for both patients and researchers.
In the afternoon, round table discussions brought researchers and patient representatives together in small groups. Early Career Researchers and Group Leaders briefly presented their scientific projects, followed by an open dialogue on how and when patients can best be involved. These lively conversations surfaced both opportunities and challenges.
A clear message from the day was the strong enthusiasm to make the Patient Day an annual tradition, creating a dedicated arena for collaboration, learning, and mutual inspiration.
We extend a heartfelt thank you to all speakers, patient representatives and advocates, and researchers at MIK/CRESCO who made this day possible, and to our partners at this event for their contributions. We look forward to continued collaborations. See you next year!
Foto credit to Guro Flor Lien
