Getting Smart about Medical Research
By Tyler Weingart, March 11, 2016
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Last year’s launch of Apple ResearchKit, the innovative software framework that helps doctors and scientists conduct medical research using data from people’s smartphones, made a big splash in the research community as a new, faster way to gather large amounts of data. The nonprofit research group, Sage Bionetworks, quickly developed the mPower study on ResearchKit to examine Parkinson’s Disease.
Last week, Sage made another big splash by releasing data from more than 9,500 mPower users to researchers worldwide.
Why? To accelerate our understanding of Parkinson’s.
The dataset, which consists of millions of data points collected on a nearly-continuous basis through mPower, will provide researchers with unprecedented insight into the daily changes in symptoms and effects of medication for people with Parkinson’s. In stark contrast to this, most Parkinson’s studies rely on data from small groups of people, typically fewer than 100, because of the difficulty in finding people to participate.
Pretty powerful, right?
How it works
mPower collects data on abilities affected by Parkinson’s, including dexterity, balance and gait, memory, and certain vocal characteristics, through tasks that make use of the phone’s sensors. For example:
- To measure dexterity, users complete a speed tapping exercise on their phone’s touchscreen.
- To evaluate speech, participants use their phone’s microphone to record themselves phonating a vowel—saying “Aaaaah”—for 10 seconds.
The app also allows participants to record the time they do each task alongside the time they take any medication, to help determine the effects of that medicine on their symptoms. Participants also complete regular surveys, rating the severity of their symptoms and what they thought made them better or worse.
All of this data is captured and aggregated by Sage and stored on a secure server, and if participants agree to share their data with the broader research community, Sage makes it happen.
By releasing this data widely, Sage hopes researchers will unlock the knowledge within and make new insights that help us begin to fully understand the lived experience of someone with Parkinson’s.
Learn more: The scale and scope of the mPower data are detailed in a new Nature Scientific Data paper.
