Swiss Multiple Sclerosis Register
Exchange at eye level
About the project
This study was about the implementation, analysis, and dissemination of the first citizen-designed health questionnaire in Switzerland. This questionnaire entitled "My life with MS" was previously elaborated in workshops with 25 persons with MS (PwMS) and was released by the Swiss Multiple Sclerosis Registry (SMSR) in July 2019. It collects information on important life events related to MS, their real-life impact, as well as personal lessons learned.
Using the questionnaire data, this implementation proposal aims
- to identify and classify typical MS life courses
- to contrast the view of PwMS on important, MS-associated life events with common clinical life course definitions
- to improve data collection methods and automated tools for text-based data analysis to better accommodate the participants’ wish to tell their story
Invovlement of citizen scientists
In all these study aspects PwMS were assuming key roles. They contributed by designing the survey, by defining important keywords for natural language processing, by reviewing the initial results, and by discussing the findings in face-to-face and/or online conferences.
Results and lessons learnt
Combined, this innovative project took citizen involvement to the next level by meeting citizens eye-to-eye throughout the full study cycle. The study not only generated insights for patient-centred care, but we also intended for it to inspire and facilitate new Citizen Science projects by other health researchers in different disease areas.
