Blog Ipsa Loquitur

Published on under Disrupt Everything

Yesterday, Apple said another thing about its Apple Watch; it previously announced when people could get one, but now we know when Apple will officially grant permission for money to be thrown in their general direction. The Apple Watch is probably going to make a lot of money, but Apple’s other big development in the last month is ResearchKit.

Michael McConnell wrote last month about ResearchKit, but the gist is that it makes at much easier for people to volunteer to participate in universities’ medical studies. For example, eleven thousand people enrolled in a Stanford University study virtually overnight. It usually takes 50 medical centers a year to enroll even ten thousand folks, so this is kind of huge.

It’s huge, but not because an iPhone ought to be a gateway to participating in medical research. That’s called selection bias and it’s bad. Rather, ResearchKit could serve as a model for using technology to improve medical research, no matter what kind of phone someone has.

ResearchKit is still in very early days, but I have sky-high expectations for it. Using smartphones to provide medical researchers with the information that will help them cure disorders caused by overuse of smartphones is beyond poetic. It represents the best and worst and silliest in humanity, and that’s something I can get behind.

Legislation, Sausage, and Apple Products

Fusion has a behind-the-scenes look at the development of ResearchKit that’s equally fascinating and baffling. It starts strong:

On September 27, 2013, during a dimly-lit presentation at Stanford’s MedX conference, Dr. Stephen Friend told an audience about the future of medical research.

“Imagine ten trials, several thousand patients,” said Friend, the founder of Seattle-based Sage Bionetworks, a nonprofit that champions open science and data sharing. “Here you have genetic information, and you have what drugs they took, how they did. Put that up in the cloud, and you have a place where people can go and query it, [where] they can make discoveries.”

This is essentially the finished ResearchKit product. It must be surreal to throw an idea out into the world and have an Apple VP walk up to you to say “hey, we have more money than we know what to do with. Let’s build that thing you said.”

Given Apple’s historical approach to data-hoarding – and the way it has traditionally refused to open-source its code – its willingness to partner with an open-source advocate like Friend is a surprise. But Apple may not have had much of a choice.

Okay, come on. Not even close. Apple’s Mac OS X is open source. So is the iOS on its phones and tablets. Here, you can download them right here. They’re built on top of Darwin, an open-source operating system in the Unix family. Unix is basically the Mitochondrial Eve of open-source operating systems like Linux, BSD, and Solaris.

Yes, Apple’s definitely had a complicated relationship with the spirit of open-source software; like most gigantic technology companies, they’re not particularly good citizens when it comes to making their source code reusable. But saying Apple refuses to open its code is like saying I refuse to pick apart otherwise excellent articles for a few inaccurate asides.

For the Hoard

Also, I don’t understand the bit about data hoarding. Is Apple “hoarding” user data, or are they “not monetizing it so ruthlessly you wince” like Facebook and Google? The data Apple has is about users. It’s our data: mine and yours. It’s about us and what we like and who we are and what we want and what we’re afraid of. Any “failure” to share that with Valued Business Partners for Identity-Driven Relationships (read: advertisements) is a good failure. It’s a failure to squeeze every penny out of people who want to use that data to put ads in front of our eyeballs.

Let’s encourage more companies to “fail” this way. We look at enough ads already.

Apple’s introduction of ResearchKit explicitly noted that users’ data is only shared with researchers that they specifically designate. That was a not-so-subtle dig at other companies which monetize medical data. That’s an odd cottage industry from where I’m sitting. It’s a federal crime for your doctor to improperly share your medical information. But your search engine is ready, willing, and able to sell access to your medical data to anyone who’ll pay.

Sign me up for more data hoarding.

One More Thing

And what’s with that odd aside about “but Apple may not have had a choice”? Well, from Fusion again:

Other tech companies like Google and Microsoft are likely working on a similar projects, but now that Apple has beat them to the punch, they’ll have to play catch-up: Whatever they come up with will be measured against ResearchKit, especially when it comes to privacy.

Why does Apple not have a choice but to work with open-source advocates? Were they trailing Google and Microsoft’s efforts, or are Google and Microsoft now playing catch-up? Who’s rounding third base, and who’s on first?

Is Apple the notorious data hoarder, or does Apple have a good track record of protecting its users’ privacy? Are those different things?

The article itself covers a lot of great stuff about ResearchKit. It’s just a little confusing in a couple of really fundamental respects, and I think a more critical eye would have helped.