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First medical apps built with Apple's ResearchKit won't share data for commercial gain

Fred O'Connor | March 12, 2015
That's the assurance from the companies involved with the mobile framework's first five apps.

Developed by the Icahn School of Medicine at Mount Sinai and LifeMap Solutions, the Asthma Health app is designed to facilitate asthma patient education and self-monitoring, promote positive behavioral changes and reinforce adherence to treatment plans according to current asthma guidelines. The study tracks symptom patterns in an individual and potential triggers for these exacerbations so that researchers can learn new ways to personalize asthma treatment.

As concern grows about data collection by mobile apps, Apple and companies involved with its new ResearchKit software development framework for medical studies say users of the first five apps have nothing to worry about.

Access to health data collected by the apps will be restricted to approved medical researchers and barred from commercial use, and the apps won't delve into the personal contents stored on a smartphone, according to the companies.

Sage Bionetworks, a nonprofit biomedical research organization in Seattle, handles collecting, de-identifying and storing of the health data gathered from the five apps developed with ResearchKit, Christine Suver, principal scientist, head of open science data governance at Sage, said in an email interview.

"We are as careful as we can be about keeping data as confidential as possible," said Suver. An independent review board has looked over the protocols for each study and the consent process and weighed the risks of participating in this research against the benefits, she said.

Apple announced ResearchKit on Monday during an event that centered on the Apple Watch. ResearchKit allows developers to create apps that can be used for medical research studies, essentially turning a smartphone into a diagnostic device. A person downloads the app from the iTunes store, consents to participate in the study and performs the functions asked by the app, which include completing tests and entering medical history information

The first five apps developed with ResearchKit debuted Monday. The framework will be generally available in April. For now, ResearchKit can only be used to develop iPhone apps. But Apple is making ResearchKit available as open source, meaning someone could extend it so that it could be used to build apps for other mobile OSes, like Android.

While Apple spoke enthusiastically about the potential of ResearchKit to help with medical studies, it also addressed concerns over the handling of health data by mobile apps. Nothing is more sensitive than a person's medical data, said Jeff Williams, Apple's senior vice president of operations, adding that people will determine how to share their medical data. "Apple will not see your data," he said.

Sage serves as a central hub for the data collected by the apps, Suver said. Sage helped develop two of the five apps, one for Parkinson's disease, called Parkinson mPower and the other, Share the Journey, for studying symptoms after breast cancer treatment.


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