The importance of the user voice in research
User participation and user involvement in research and innovation processes is about letting those who know the needs be part of shaping the agenda. There is an explicit expectation that research projects should take advantage of the experience and knowledge built by those who live with or near the patient. User involvement is an approach for making certain that this competence and this perspective has a natural place and voice in the research projects. The user perspective can be useful in strategic decisions when planning and establishing projects, as well as when planning the small but essential details that ensure projects are aligned to the requirements and challenges of the people living with the disease. When funding research and innovation projects, the government expects user experience and knowledge to be part of the projects. This makes it more likely that new knowledge will reflect user requirements, and that it will be implemented and used. We in the User Council find this to be an important and appropriate goal for our engagement in the Neuro-SysMed activities.
The assignment of the User Council
The User Council provides advice to the Neuro-SysMed management and contributes towards:
- development of research ideas and in discussions on clinical research;
- recruitment of user representatives to the Centre’s research;
- equal access to participation in clinical trials;
- design of user-friendly information from Neuro-SysMed;
- communication of research results;
- bringing attention to the work of the Centre.
Further, the User Council works to:
- be a link between users and the Centre;
- attend various relevant events;
- work for political attention to the work of the Centre and increased funding of research related to neurodegenerative diseases in general;
- contribute towards good principles for user involvement.
The User Council wishes to contribute to increased awareness of the opportunities for patients and caregivers to participate in clinical trials. Many are still not aware of this as a treatment option. Additionally, we emphasise the importance of user representatives in research projects. We see that users for example can:
- identify current topics or challenges;
- contribute to improved research design;
- contribute to better recruitment of patients and their participation in the trials;
- contribute to the dissemination of research results;
- give feedback on language, how to present the message, and on dissemination channels;
- bring in new perspectives on the analysis of results.
Current members of the User Council
- Lise Johnsen, Norwegian MS Society (Chair)
- Lemia Boussaada, Norwegian Parkinson Association (Vice-Chair)
- Kjell Grorud, Norwegian Parkinson Association
- Jan Anders Istad, Norwegian MS Society
- Kristin Reimers Kardel, National Association for Public Health
- Ditte Staldgaard, National Association for Public Health
- Marit Stensen, ALS Norway Foundation
- Nina Bjørum, Alltid Litt Sterkere
- Mirjeta Emini, National Association for Public Health (deputy)
- Mona Bahus, ALS Norway Foundation (deputy)