Apple Research hands-on: Want to share years of personal data for free?

Apple Research hands-on: Want to share years of personal data for free?

I’m impressed by Apple’s new Research app for the iPhone and Apple Watch. It’s beautifully designed, ambitious in scope, and so intimately tied into the iOS and watchOS operating systems that it could serve as a singular example of Apple’s “seamless integration of hardware, software, and services.”


But after digging into the Research app, I don’t feel comfortable actually using it, and have mixed feelings about recommending it to others. Each of the first three studies involves a multi-year commitment to giving Apple’s research partners free access to your personal data. The shortest study, focused on hearing health, runs for two years with an optional two-year extension, while the longest — tracking menstruation and other personal details — says it “may last for decades.” A new heart and movement study is expected to run for five years.


I don’t know that I’ll be wearing an Apple Watch five years (or multiple decades) from now. And I don’t know that I want to keep passively feeding personal data to researchers, or actively responding to in-app requests, for even a month, say nothing of years.


The story might be different if researchers gave me an Apple Watch for free or compensated me for its cost over the years of a study. But as much as I want to help advance medical research, the idea of signing up for years of unpaid contributions — to a trillion-dollar company and its well-funded medical partners — doesn’t sit right with me. If you feel otherwise, here’s what you can expect from the Apple Research app experience.



Elegant design for a medical app


Medical apps tend to be as charmless as the clipboard forms at doctors’ offices: functional, rarely elegant, and never beautiful. By contrast, the Research team at Apple clearly thought about the need to convince users to launch and keep using this app, making the wise decision to include clean, compelling visuals wherever possible.


On the iPhone, you see three simple tabs, anchored by attractive graphic design for the central list of Studies. Alongside it are straightforward Tasks and Your Data tabs that let you know what you need to do, plus what you’re sharing with Apple and its health researchers.


Before you actually start signing up for anything, Apple briefs you on what the Research app and its Studies will be doing. To the company’s credit — and I say this with deep appreciation for Apple’s general avoidance of legal documents or signature requirements when first booting up an iPhone, iPad, or Mac — the app is hyper-aggressive in its disclosures, and rightfully so given its content. You learn not only about the app, but about the “Research Ethics Committees” and additional privacy/security precautions used by studies, your privacy rights, and the types of request that will be made of you, down to granting specific permission to be sent multiple Research app notifications.



I cannot imagine Google — or most other tech companies — going through the same disclosure process. Moreover, I cannot believe that most companies would follow through on all of the commitments made during the process. We’ll have to see how Apple and its partners do over time.


Once the app-level acceptance is complete, you’ll see a much longer round of disclosures for each Study you want to participate in. The Apple Heart & Movement Study, for instance, tells you all about the study, the partners, and the “Expectations and Requirements” for participation before you even begin the enrollment process. Apple says that you shouldn’t “share your iCloud account, iPhone, or Apple Watch with anyone else to ensure data integrity.” You’ll also be told that the “study will last for at least five years, and you’ll be asked to confirm your participation every two years.”



Assuming you accept that mission, you’ll be told to expect 10 minutes of enrollment steps: filling out a personal profile, signing “a few forms,” and reviewing requests for data access. The process will take considerably less time if you don’t read everything, which includes a brief disclosure of your rights under state law, a lengthy informed consent form, and HIPAA authorization.


Each step requires a signature, and if you pay attention, you’ll note that you “will not be compensated for taking part in this study,” but you also “will not be charged to participate” — except for whatever phone and text messaging costs you incur in communicating with Study Staff, the use of your cellular data plan to share data, and the undiscussed cost of your Apple devices.


Wow. Some research studies give participants access to free prototype medicines or procedures, or at least a little compensation just for showing up. Apple’s studies don’t even cover the ancillary costs of participation.



You’ll also need to authorize multiple uses of your devices’ sensors, which Apple again deserves credit for so clearly disclosing. For the Heart & Movement Study, users will share “Detailed Health Rate,” “Distance and Speed,” “Elevation,” and “Motion” data, notably including “high-fidelity” data but not “specific location information.” Samples of the collected data are included so you can see clearly what is and isn’t being shared, all exemplary — assuming you trust that Apple is only doing what it says it’s doing.



Once you’re through that process, you begin completing tasks, including filling out demographic research details that can be shared with one or more of the studies. Surprises in the questionnaire included multiple questions on gender and gender identity, as well as a self-ranking of “where you think you stand at this time in your life relative to other people around you” on the ladder of money, education, and respected employment. I’ll admit to being skeeved out by the ranking question, but there’s probably some reason it’s in there.


The last of the tabs, Your Data, lets you quickly look at the sensor and usage data that’s been collected, which Studies have access, the health data and records you’re sharing, and both the in-app research profile and demographic information you’ve provided. Apple lets you stop data collection on an overall or category-by-category basis, export or delete all of your collected data, and edit your profile and demographic details. All of the consent documents, including their signature dates, are available inside the app as well, though there doesn’t appear to be a way to revoke signed consent within the app once it’s been given.



The Apple Watch app is disarmingly threadbare. It merely displays tallies of the tasks you’ve completed and the number you have pending, though it’s likely operating in the background along with watchOS, gathering data that’s been authorized by the iPhone app. My impression is that it will have more functionality in the future, but won’t require as much input as its larger-screened partner.


Since the Research app and studies have only been out since this morning, I haven’t had the sort of long-term experience I’d want for a full review. But the basic contours of the software and studies are clear: Sign up, get monitored, and pass that data through Apple to researchers for the benefit of society as a whole.


Apple makes data sharing easy, but should you?


My views on medical research are complicated. I admire medical researchers, and appreciate that Apple is trying to leverage data from millions of Watch users for potentially beneficial medical research. When Apple launched its original Apple Heart Study with Stanford University, I signed up and shared my data — heartbeat and limited survey data — through its September 2018 end, without any need or request for compensation. It was a modest ask, and as I wanted to see the Apple Watch’s heart health functionality improve, I was glad to help.


But the Research app is going far beyond the prior Heart Study in both breadth and depth of data collection, asking for passive sharing and active responses that I wouldn’t just give away. There are good reasons that many medical studies pay their participants; similarly, there are some types of personal data that I wouldn’t want to share even if I was being compensated to do so.


You may feel differently, and that’s why Apple and its partners are casting a wide net with this app; they’re hoping to find a lot of people who will participate for free. From where I stand, there’s something uncomfortable about huge tech companies and medical organizations asking for free access to personal data — including “some of the most sensitive data on your device” — then providing multi-year timelines and rules for who you can share your devices with. I understand why Apple’s executives and medical researchers would want this to be the case, but even if you ignore that they’re high up on the aforementioned societal ladder of haves and have nots, I own my devices; they’re not supposed to own me.


Some people will completely wave these sorts of concerns off. Yes, Apple and its partners might wind up gathering personal data from a Watch’s ambient noise measuring microphone, but will they, really? Sure, you’re agreeing to let your movements and heart activity be tracked, but not your precise location, and Apple’s promising to fuzz the data to obscure individual information. Everyone here is well-intentioned. Right?


As we saw earlier this year when Apple was revealed to have contractors listening to users’ audio recordings for Siri accuracy scoring, we don’t really know. Ditto on the utterly shocking discoveries that iPhones and Apple Watches were sharing audio over FaceTime even when calls weren’t answered. Privacy violations somehow still happen with the most supposedly secure products from the most privacy-focused companies, even when we have no idea that they’re possible. For all of the good it may do, the Research app effectively flips a lot of personal data gathering and sharing permission switches to the “on” position, complete with signed agreements that you might not be able to easily take back.


You can decide for yourself whether to share your data and devices with Apple’s Research app, or not. I’m personally going to hold off for now, but I hope that the app is just the beginning of more positive interactions between Apple, medical researchers, and study participants, with even better protections and incentives to participate in the future.

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