By Jennifer Salopek
Apple launched its Research Kit on March 9, “giving medical researchers the tools to revolutionize medical studies,” according to a press release. The kit comprised five iPhone apps to gather data from participants with asthma, breast cancer, cardiovascular disease, diabetes, and Parkinson’s disease. The Asthma Health app was developed by a team at Icahn School of Medicine at Mount Sinai, led by Yvonne Chan, MD, PhD, FACEP. At a presentation at the AAMC Council of Teaching Hospitals and Health Systems meeting in Austin last month, Chan detailed the preliminary results generated by the app.
“These apps are designed to revolutionize medical research by scaling up participation to unprecedented levels,” Chan explained. The app uses patient self-monitoring via surveys and structured tasks, plus such objective data sources as air quality, to generate data—reams of data. In the six weeks since the release, 46,000 people had downloaded Asthma Health, and more than seven thousand had registered to participate.
One thing that surprised Chan was the degree of interaction users are having with the app. Users are only required to log in once daily, she explained, but the typical user accesses it two to three times per day—a high degree of user retention. “We’re not there to dazzle [users] but despite that, they are staying with us, going above and beyond the call of duty,” she said. Chan noted that the “aggressive development schedule dictated” by Apple meant that her team released a fairly basic version of the app, but that they are adding features as they go along.
Preliminary data shows that use of the app is associated with better asthma control. Users are predominantly white, educated, and of higher socioeconomic status, Chan reported. The highest concentrations of participants are in California, New Jersey, and Texas. They can report the medicines they’re taking, workdays missed due to asthma, and doctor visits. The benefits of the app are numerous, Chan says.
For example, participants are in charge. “This is a paradigm shift from the traditional [research] model. Users can choose to participate in the study and answer questions, and the app allows de-identified data to be shared,” Chan said. “We have been astounded that the overwhelming majority want to participate and are open to sharing.” She noted also that the mobile app removes geographic and time barriers to data collection.
The app facilitates objective assessments, such as local air quality or daily steps taken. “Passive monitoring combined with activities that can be completed at any time results in a high frequency of assessments,” Chan said. Further, real-time monitoring and feedback makes the app a “powerful platform for studying ways to motivate healthy behaviors via real-time interactions,” Chan said.
The team is already planning refinements to the app, such as an algorithm for personal asthma trigger avoidance. Chan reports that she has been talking with device developers who are working on Bluetooth-enabled devices for spirometry, which would “remove our reliance on self-reported data,” she said.
There are some limitations to the seemingly unfettered promise of mobile apps for health research, Chan cautioned. For example, there is an inherent selection bias resulting from the use of smartphones. Identity verification and reporting can be tricky; for Asthma Health, this is achieved through an email verification step. She also worries about the potential for long-term data collection–“I’m concerned that interest will decline over time”—so the team is working on possible gamification elements, such as the earning of badges, to keep participants engaged.
Being a part of the Research Kit launch clearly was a memorable experience for Chan and her team. “I thought it would be a side note to watch, but there was palpable excitement around this,” she said. “Mobile health may change the future role of the hospital. Online care, telemedicine, and self-reporting could make the home an extension of the hospital.
“I’ve drunk the Kool-Aid.”