Table 3.

Insights derived from 21 patients who viewed mock-ups.

Insight	Examples	Quotes
Information: Patients do not know which information is important (18/21, 86%)	Sharing information across specialties Understanding their course	“If I talk to any other doctor, they don’t know about my specific clinical trial.” “We don’t know which level we're at—so it's important that now that we know how to treat it, now that we have the chance to take better drugs, it's very lucky.”
Education: Patients feel like their doctors are not telling them the whole story (12/21, 57%)	Knowing when their diagnosis changed Understanding the landscape	“I didn't know I was secondary progressive until I decided to read all of the informational packets they give you at the appointment. I said ‘Wait, when did that happen? Nobody told me!’“ “The judgements about who is getting better and who is getting worse, and which drugs are working—because there's no way to truly compare.”
Data: Patients want more tracking options and ability to see their own data (19/21, 91%)	Tracking things that are relevant Comparing their data with other relevant data	“I want a tool that will benefit real people” “There's so many aspects—travel, activity, medicines. I want to see that.” “I'm not curious about other people—usually the information is not relevant because it's so so different for everyone. But this [support group] is a great group, I just wish we were larger.”
Emotion: Patients express fear and discretion (9/21, 43%)	Wanting to not progress or hear about progression	“I don’t want to know if it’s getting worse.” “Sometimes I don't want to know—because I grew up with my father, watching his stages.” “Loved to read, prayed that her vision wouldn't go even if she would be in a wheelchair ”and the lord granted my wish, I'm in a wheelchair, I can read, but I don't read, really anymore. I lost the concentration of what I was reading—I can't remember it.”
Clarity: Patients want clearer labels and explanations of the tool (6/21, 29%)	Understanding the parts of the graph Clarifying the content and labels of the graph	“How is this graph made?” “What is this plotting?” “What do these terms mean?” “It's unclear because there's a chance I'm in one part of the graph, and a chance I'm in another.” “Lack of experience, makes it hard to know where to go.”
Perception: Patients want the tool to present a positive view of multiple sclerosis progression (13/21, 62%)	Tracking full course Understanding treatments and options	“I am living with it, I am not suffering.” “Then they say ‘so and so died from MS,’ and it's like 'Yeah, it's not the MS that kills us, it's the different things that the MS is affecting, but that's only if we sit on our butt and don't do anything.'” “’You'll never be normal’ But I persevered, and it was important to be able to track all my shots, my own things to look out for—I'll know what the things are that I need to do, so I don't fall off the wagon.” “We don't know which level we're at—so it's important that now that we know how to treat it, now that we have the chance to take better drugs, it's very lucky.” “I haven't been seeing anything progressing—but getting better.”