The Experiences of People with Multiple Sclerosis on Patient-Generated Data Through Digital Tools

Abstract

Digital services enable the real-time recording and transmission of patient-generated health data (PGHD) to health care professionals. This study aimed to understand the experiences of people with multiple sclerosis (pwMS) regarding PGHD and digital tools in decision-making. Additionally, we sought to identify which elements of PGHD they find meaningful to share with health professionals. One focus group interview was conducted in June 2023 with five pwMS. Data were analysed using a deductive content analysis method. The participants were proactive in sharing PGHD with healthcare professionals and hoped that this digitally generated information would provide more targeted guidance for disease management and treatment decision-making. Particularly, they wanted to influence the choice of rehabilitation methods. However, the possibilities to utilise patient-generated health data varied across healthcare.