The importance of user involvement in research
User involvement helps ensure that research reflects the needs and experiences of people living with disease and their families. Patients and relatives bring valuable knowledge about how a condition affects everyday life, which can help researchers develop relevant research questions, design better studies, and communicate results in an accessible way.
By involving users throughout the research process, Neuro-SysMed aims to make its research more relevant and useful to the people it is intended to benefit.
The role of the User Council
The User Council advises Neuro-SysMed’s management and researchers and contributes to:
- developing research ideas and providing input to clinical research
- recruiting user representatives to research projects
- promoting equal opportunities for patients across Norway to participate in clinical trials
- making information from Neuro-SysMed accessible and user-friendly
- communicating research results and opportunities to participate in clinical studies
- increasing awareness and understanding of user involvement in research
The User Council also helps strengthen collaboration between researchers, patients, relatives, and patient organisations. This provides an important link between the Centre’s research and the people affected by the diseases Neuro-SysMed studies.
Current members of the User Council
- Lise Johnsen, Norwegian MS Society (Chair)
- Ditte Staldgaard, National Association for Public Health (Vice-Chair)
- Lemia Boussaada, Norwegian Parkinson Association
- Kari Grace Bru, Alltid Litt Sterkere
- Kjell Grorud, Norwegian Parkinson Association
- Jan Anders Istad, Norwegian MS Society
- Mette Kalve, ALS Norway Foundation
- Kristin Reimers Kardel, National Association for Public Health