“To get 10,000 people enrolled in a medical study normally, it would take a year and 50 medical centers around the country. That’s the power of the phone.”
— Alan Yeung, medical director of Stanford Cardiovascular Health, after it took a day — from Monday to Tuesday this week — to get that many signups in a cardiovascular study using ResearchKit, a tool announced Monday by Apple.
ResearchKit, an open-source software platform, aims to help medical research by allowing researchers to use data collected by apps — on the iPhone only, so far. Five such apps are available now, ahead of ResearchKit’s release to developers next month. ResearchKit works with Apple’s previously announced HealthKit, for which there are hundreds of health and fitness apps.
One of the ResearchKit apps is mPower, which tracks symptoms of those with Parkinson’s disease. The app also gathered thousands of signups within hours of its release. Sage Bionetwork’s Chief Commons Officer, John Wilbanks, who worked on the app, tweeted that the over 7,000 signups dwarfed that of the previous largest study, which involved 1,700 participants.
“We were pretty shocked as those numbers went up yesterday — in a good way,” Wilbanks told the Verge.
The huge pools of study participants excites some researchers but is cause for concern for others. Among the issues: possible misleading data, skewed results, the lack of two-way interaction when asking participants for informed consent.
“Just collecting lots of information about people — who may or may not have a particular disease, and may or may not represent the typical patient — could just add noise and distraction,” Lisa Schwartz, professor at the Dartmouth Institute for Health Policy and Clinical Practice, told Bloomberg. “Bias times a million is still bias.”
Then there’s the privacy question. Apple said Monday it won’t see the data collected by these apps. Makers of the apps available so far, including Sage Bionetwork, say they’re anonymizing the data. But Wilbanks told the Verge: “We can’t promise perfect anonymity… Because we’re going to make [the data] available for lots of research, there exists a chance that someone could re-identify you.”
