Apple CareKit should spark heightened privacy debate

Apple's open-source software framework for developing personal health iPhone applications will give apps access to sensitive personal data, further stirring the privacy debate.
Written by Chris Kanaracus, Contributor

While most of the attention from Apple's announcements this week focused on the iPhone SE, perhaps the most consequential of Apple's announcements was about CareKit, Apple's open-source software framework for developing personal health iPhone applications. From the announcement:

iPhone apps using CareKit make it easier for individuals to keep track of care plans and monitor symptoms and medication; providing insights that help people better understand their own health. With the ability to share information with doctors, nurses or family members, CareKit apps help people take a more active role in their health."We're thrilled with the profound impact ResearchKit has already had on the pace and scale of conducting medical research, and have realized that many of the same principles could help with individual care," said Jeff Williams, Apple's chief operating officer. "We believe that giving individuals the tools to understand what is happening with their health is incredibly powerful, and apps designed using CareKit make this a reality by empowering people to take a more active role in their care."

CareKit builds upon the previously released ResearchKit, which is aimed at helping researchers conduct medical research, and is set for release next month. It consists of four modules: Care Card, for tracking your care plans and to-do lists, such as when to take medication; Symptom and Measurement Tracker, for ongoing tracking of your symptoms; a dashboard that compares Care Card data to symptoms; and Connect, for sharing health information with doctors and family members.

The framework is already gaining serious interest from prominent hospitals, including Beth Israel Deaconess in Boston and Texas Medical Center. Initial applications being developed target Parkinson's disease, pregnancy, diabetes and other conditions.

As Wired and other tech news outlets have noted, CareKit applications will handle some of, if not the most sensitive personal data imaginable, and the pressure will be on Apple to provide the type of robust security measures this demands.

CareKit data stored on the device will be encrypted, and users will decide which apps and third parties get to see it, Apple says. Still, the prospect of millions of iPhone users generating massive amounts of personal health data means Apple has a long discussion about privacy and security ahead of it--one that could influence the FBI case, and which is already getting into high gear, judging by the reaction on social media.

Apple CEO Tim Cook famously wrote an open letter to Apple customers about privacy in 2014, followed by a number of detailed privacy and data protection explainers that committed the company to restraining how it uses customers' personal information, notes Constellation Research VP and principal analyst Steve Wilson.

"This is what privacy is all about--restraint," Wilson says. "If a business knows me, then it should be restrained in what it does with that knowledge, especially when it is health related. It's becoming clearer everyday how much intimate knowledge the fitness and health apps are gathering and synthesizing, that is working out additional healthcare insights from big data. This is dynamite."

"I call it Algorithmic Collection, or Synthetic PII (Personally Identifiable Information)," Wilson adds. "If a business can work out the state of your health, by adding up all the fitness signals and other data, and without asking you any questions, then the company is very much liable for those intimate insights, as if they had got you to fill out a questionnaire or consent to blood tests."

When Apple released Apple Watch, Cook said it would gradually get to know a user, much like a personal trainer would, Wilson adds: "That was creepy at the time but he followed through with the promise to never exploit PII. All Apple's actions since then have been consistent with the privacy model, of heavily restraining what they do with personal data. Apple has proven itself to be trustworthy in the minds of many consumers."

"Now with CareKit, a big question will be how does Apple ensure ongoing restraint on the part of its partners, in the way they handle the data freed up by the Apple platform?" Wilson says. "Will Apple enjoin CareKit developers and services to the same privacy standards? Perhaps. That would be consistent."

The world can truly benefit from advancements like CareKit, but the importance of patient privacy can't be underestimated.

"I'm really optimistic about ehealth," Wilson says. "I've worked in this field for nearly 30 years, including a lot of work in clinical trials for medical devices, and I appreciate the potential of new technology. Smart devices for collecting health signals, big data for analyzing and discovering deep new insights, monitoring drug efficacy and public health interventions, instrumenting more and more of what we do. This need not be creepy if it's properly designed, properly explained to consumers, and the benefits properly shared with people."

"The quality of the ehealth outcomes rests on good participation," he adds. "We need people to be comfortable giving up their data. We don't want incomplete data or biased datasets as a result of consumers opting out, or worse, sabotaging data. Privacy isn't hard. It just requires respect, and for businesses to resist the temptations of exploiting the data they are so lucky to have."


This article is brought to you by Constellation Insights. Constellation Insights is an online news service published daily to advise members of the Insights community on the significance and implications of developments in enterprise technology.

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