Chronic diseases are the leading cause of loss of life and quality of life globally. Multiple sclerosis (MS) is a serious chronic disease that affects the central nervous system. It affects young adults and lasts a lifetime. There is no curative medicine. Patients with chronic diseases such as MS are in contact with the health service a few times a year, and with the specialist health service perhaps only once a year. These meetings are important for the follow-up of the disease, but only give a snapshot of how the person living with the disease is feeling.
The MyMS-project will develop and test tools that the individual can use to document and communicate how they feel in everyday life. The project is really user-driven and follows the principles of user insight and co-design. In this way, we ensure that patient preferences control the content, while researchers control the choice of method, testing, and implementation. The methods we use are digital group interviews and individual testing of prototypes.
