First Patient Day
On 21 August, Dr Lorena Arranz, Deputy Centre Director at CRESCO - Centre For Embryology and Healthy Development together with Anita Kavlie from EATRIS Norway hosted the first Patient Day at MIK/CRESCO, bringing patient representatives and patient advocates, infrastructure, and researchers into the same room to explore how patient involvement can be strengthened across all stages of research.
Patient involvement
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 (Norwegian Bladder Cancer Society)
- Patient advocates were represented by the Acute Leukemia Advocates Network
- Researchers at Universitetet i Oslo (UiO) and Sykehuset Asker og Bærum HF shared their point of view into the topic and own experiences.
Resources
The resource session highlighted key national and European initiatives:
- Folkehelseinstituttet 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 organizations 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
Round table discussions
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 all participants for their contributions. We look forward to continued collaborations. See you next year!"
Lorena Arranz and Anita Kavlie.