06 March 2020

Patient Council member Jon Skandsen presents our project experience of involving patients in research at the Oslo Metropolitan University

On the 26th of February 2020 our patient council member – Jon Skandsen, held a presentation titled “Patient Involvement in Research - Experiences from the APPROACH project” at the Oslo Metropolitan University, Faculty of Health Science.

The goal of the presentation was to provide insight into the involvement of patients in research in general but also to showcase the experiences we have gained in APPROACH of doing this. The presentation was given to professors, researchers and PhD students. The topics Jon covered spanned description of the work done in the APPROACH project, introduction of the Patient Council (PC) and information about the tasks, work and challenges that its members meet, as well as explaining the content and goal of the participant newsletter prepared in close cooperation with the PC and the patient evaluation forms prepared for clinical visits. Lastly, he elaborated on the European League Against Rheumatism (EULAR) Guidelines for Patient Involvement in Research projects.

Jon explains: “The audience was quite interested and also impressed by the APPROACH project. They understood the challenges of Patient Involvement in such a large, multi-national project, and also realized that a lot of efforts are required for such a project to be successful.”

Attendees shared that they have used patient representatives in smaller and more local projects, also with great succes. The faculty of Health Science had carried out several research projects with a more clinical or interventional profile than APPROACH. In the end of this seminar, Jon facilitated discusssions about the differences between making Patient Involvement successful and the potential benefit of such activities.

This discussion gave me more insight in other ways to do Patient Involment in research projects.”, Jon shares.