ResearchKit, Apple's Medical Data Experiment, Explained

If an Apple product is released and hundreds of people aren’t lined up outside the Apple Store to buy it, is it still an Apple product?

Yes. Yes, it is. The product I have in mind has been downloaded from the App Store and used by over 65,000 people in two months, and the results could impact us over several lifetimes.

I’m talking about ResearchKit, which is Apple’s way of letting people use their iOS devices and apps to join medical studies and send data to researchers.

Apple

In this column, I answer some questions about ResearchKit and how its various apps work for doctors and patients. Not every app requires that you have the specified disease or condition to use it, which might just prompt the do-gooder in you to open it instead of playing your 11th round of Candy Crush. In my case, even though I don’t suffer from Parkinson’s or cardiovascular disease, I was still able to contribute data to these apps.

How does ResearchKit work?

ResearchKit was announced and launched at an Apple event on March 9. To kick things off, five free ResearchKit apps were added to Apple’s App Store. Each focuses on a different disease: diabetes, asthma, breast cancer, Parkinson’s disease and cardiovascular disease.

These apps can be downloaded on an iPhone 5, 5s, 6, 6 Plus or the latest-generation iPod touch. With your consent, they pull data from Apple’s Health app, which was loaded onto your device in an iOS update last September. If you have an Apple Watch, activity data from it can also be sent to these apps.

Though there are currently only five apps that fall under the ResearchKit umbrella, they’ve already changed the way doctors get research data and how often patients provide it. For example, one doctor told me that a traditional study would take a couple of years to get 500 to 1,000 participants, while his Asthma Health app in ResearchKit got more than 3,500 people within 72 hours of the ResearchKit launch.

Who are the doctors and researchers behind these studies?

Eight different organizations are tied to these five ResearchKit apps. They include big names you’ve probably heard of or read about, like the Dana-Farber Cancer Institute for the Share the Journey breast cancer app, Mount Sinai for the Asthma Health app and Stanford for the MyHeart Counts app.

Apple

What can I expect in the way of privacy if I use these ResearchKit apps?

Naturally, some people might be weirded out by the thought of sharing their health data with Apple, but Apple says it never sees this information. Instead, the ResearchKit framework was designed so that data gets encrypted, then goes directly to the researchers who are conducting the studies. Also, your name is replaced by a random code, so the data isn’t tied to you.

Details about how this information is shared can be found in the e-consent forms you read and sign before joining a study. (You sign a digital, on-screen form with your finger.)

In the apps I tried, I was able to choose between sharing my data only with the medical institution conducting the study and its partners, or sharing my data with that medical institution and qualified researchers worldwide. I could also opt out of sharing certain information, like my name. Your consent form automatically gets emailed to you for your records.

Also, reopening a closed app required me to use my iPhone’s touch ID for access, which I found to be a privacy bonus.

What’s required of me once I start using the apps?

I downloaded all five of the current apps within ResearchKit, and discovered that different studies track different data. For example, one might be based on a survey, without any need to access your activity data. Another might ask for details about what medications you take and how often you take them. Or certain apps may require that you perform specific in-app activities each day, like walking for 20 steps, or saying “ahhh” into your phone’s microphone. (This voice test was for the Parkinson mPower app, which measures your voice’s variations and trends over time, and may reflect variations and trends in Parkinson’s symptoms.)

I found that I could skip certain questions I wasn’t comfortable answering — or simply couldn’t answer. The Parkinson mPower app, for example, is open to people with and without Parkinson’s disease, so I could use it. But when it asked in what year I was diagnosed with Parkinson’s disease, I had to skip the question.

App home screens are broken into four categories — Activities, Dashboard, Learn and Profile — and are represented by icons at the bottom of the screen. In the case of the Parkinson mPower app, my activities included tapping the screen for 30 seconds with two fingers three times a day, and walking 20 steps with my phone in my pocket or bag to measure my gait and balance. The MyHeart Counts activities consisted of several survey questions about my behavior, like, “In the last 24 hours, how often did you have your phone or wearable device with you?”

How easy is it to fool these apps?

The MyHeart Counts app only asked me three questions (if I was over 18 years old, if I lived in the United States and if I could read and understand English) to determine my eligibility.

But the Asthma Health app asked five questions and determined that I wasn’t qualified to participate (I answered that, yes, I am pregnant; and no, I wasn’t currently taking any medicines). Instead of getting locked out of the app, I discovered that I could simply go back one screen and change my answers to proceed.

I spoke with several doctors who said that most people who are participating in these studies to trick the system won’t likely keep up with the app on a daily basis. Even if they do, the doctors said that they have enough data that a handful of outliers won’t have a huge impact on their studies.

And they correctly pointed out that people can lie on traditional paper surveys and in-person research studies, too.

Do these apps only work on Apple devices?

In April, Apple open-sourced its code for ResearchKit apps (developer details can be found here). This means that developers for other platforms — like Android — can create their own smartphone apps for ResearchKit. This gives researchers access to even more people, and more data.

ResearchKit might not have the hip cachet of a product like the Apple Watch, but it’s a major advancement from those flyers in the doctor’s office that had tear-off phone numbers soliciting participants for research. Its impact on the medical community will only grow over time as more people start to understand how it works and what it does.

This article originally appeared on Recode.net.

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