Research for the mPower Parkinson’s Study App

Summary

I used interviews, storyboards, and low-fidelity prototypes to understand the needs of people with Parkinson’s for tracking symptoms. Based on the findings, I created early design concepts for a mobile app to measure Parkinson’s symptoms from your phone. I worked with stakeholders to scope the project and prioritize features.

The goal - understand what would make symptom tracking valuable to people with Parkinson’s disease

Parkinson’s Disease gets worse over time, but the rate at which symptoms change varies quite a bit. To study symptom progression, researchers wanted to create a mobile app that people with Parkinson’s could use to measure their symptoms over time.

But the Sage team didn’t want to just measure people’s symptoms. They also wanted to create an app that would provide value back to users. My job was to figure out what users needed and understand what the app needed to do to provide value to users.

The research questions - who’s it for and what is it exactly?

For this app we needed to understand:

• Who should the app be designed for?

• What features should the app have to increase its value for users?

What did I do?

After discussions with stakeholders about project goals, I interviewed people with Parkinson’s Disease to understand their needs for symptom tracking and managing life with the disease.

Recruitment: I recruited through personal networks, professional networks, participants in past studies, and every other channel I could think of. Some recruitment attempts worked out (I see you, boxing studio!); some didn’t. Since early interviews showed that care partners are often key stakeholders, I expanded our target population to include care partners and interviewed them, recruiting through snowball sampling and other channels. Eventually I got a sample that resembled the population in gender and had a wide spread of time since diagnosis.

Method: I started with just interviews, but after the first four there were some themes arising already that could point us toward very different use cases. I drafted some storyboards to understand the relative value and issues around four specific use cases. The storyboards helped me focus the conversations on the relative value of different features. When I reached saturation, I kept recruiting but started showing early prototypes of ways to view data to get feedback on what worked and what didn’t.

Analysis and reporting: I discussed emergent themes regularly with the UX team and with a larger group of cross-functional stakeholders. After doing a few interviews, I talked through emergent themes with the UX lead and discussed the storyboards. After doing more interviews, I wrote some themes on post-it notes and we did a quick and dirty affinity diagram on the white board. I based my mockups on that process, and started creating more detailed documentation as well. Ultimately I delivered a report on the project, a list of design tensions and user needs, a couple of powerpoint presentations (given to different audiences), and a scientific publication accepted at CHI.

What was my impact?

• I defined the main functions of the mPower app for users. I identified the need for users to see how their own symptoms were progressing and to be able to track that information alongside other information, like their medications, diet, exercise, or other factors, to understand how outside factors influenced their symptoms.

• I translated my findings into mockups that I handed to the design team.

• I used insights from the interviews to help prioritize features given resource constraints.

• I demonstrated that care partners were important stakeholders in symptom tracking. However, since including multiple users increased the complexity of the system considerably, we did not include them as users of the app.

Notes and Acknowledgments

This work could not have been done without the amazing people at Sage Bionetworks. To name a few: Woody MacDuffie, Stockard Simon, Michael Kellen, Larsson Omnberg, Lara Mangravite, and many others. In addition, this work could not have gone forward without my participants. I thanked you when you participated, and I thank you again here.

I also want to note that one thing I learned in this work was that if you’ve talked to one person with Parkinson’s, you’ve talked to one person with Parkinson’s. The needs of this community are extremely diverse, and while my findings reflected the needs of some users, they definitely do not represent the needs of every person with Parkinson’s.