Table 1.

Patient interview insights.

Insight	Patient input
Clarity	Does not want to be inundated with information Wants to reclaim control of their disease—too little clarity, not enough power in their hands Currently feels like there are no clear answers given, feels alone in trying to understand Wants information that is easy to understand and translate between centers Can be medically illiterate at times—feels they have a lot of misconceptions
Data collection and visualization	Tracks in everything in a notebook—filled with other information Wants to see scores
Personalized	Tracking their own progress and treatment efficacy, balanced with their own preferences and needs
Trajectory	Wants to know if they are getting better or worse Wants to know 5-year outlook Constantly playing mind games to stay positive
Comparison	Would like to see other patient data without communicating with them Wants to meet other people with the same progression Wants to gain more perspective about other people with MSa
Treatment	Wants to know that the treatments they are getting are useful or the best for their disease
Resources	Wants more information about specific areas of interest—genetics, therapies, and education about MS Wants lots of educated opinions
Time with specialist	Prefers time spent with doctor to time spent researching on their own Does not know what to contact their neurologist about Will not go to the doctor until it is unbearable Wants a printout from every visit

^aMS: multiple sclerosis.