If you’ve ever been inside a medical research center, you’ve probably come across a bulletin board with flyers advertising studies that explore a new treatment for cancer, infertility, or a neurological condition, with a number to call in order to volunteer for the study. These flyers are how clinicians recruit subjects for what they say could be the most innovative, effective therapies of the future. It's an insane, archaic system that hasn't changed in decades.
And it gets worse. If you manage to be accepted to a study, chances are you’ll have to haul your sick self to the lab one or more times so that clinicians can run their tests. Then, you wait for weeks or months while your results are generated—results, by the way, that you may never see. And if all goes well, and a new treatment hits the market based on the study, you typically get no special access, no participant's discount. You just get to take the medicine like everyone else.
This is the old-fashioned way of generating new drugs and therapies. On the other end of the medical spectrum, there are quantified-selfers who do it all themselves—collect their own data, analyze it, and self-prescribe remedies based on the results they get. Neither approach, though, has served up what we need to cure disease.
“That’s the problem ResearchKit is trying to solve,” Dr. Stephen Friend told me. Friend is one of the brains behind ResearchKit, Apple’s new open-source platform for medical research. Apple's hope is that ResearchKit will make it easier for scientists to build apps that collect health data for research from volunteers by leveraging the iPhone’s sensors, as well as the many personal trackers that can be connected to it. At the same time, people will get feedback in real-time from the apps about their symptoms, which they can use to manage their conditions. It’s a new way to run clinical trials and develop tailored therapies—and a much-needed middle ground between the old-school medical establishment and the new-school DIY crowd.
“I think something seismic is about to happen," Friend said. "In three to five years, 80 percent of people will be sharing data and getting insights in two ways: on things that they should do to keep themselves from getting disease and giving clues as to the real contours of disease which could help in trials and developing new therapies."
Imagine, Friend says, if we had the equivalent of a biological battery meter, a tool that could process thousands of distinct micro-events and tell us when we were about to dip below a certain threshold of health. With the right information, we might be able to fend off diabetes, Alzheimer’s disease, a heart attack or the flu before they get severe.
“Civil tools” like smartphones and cheap sensors could help us get to that point, Friend says, if only we had a way to integrate the information they gather and make sense of it. That’s where ResearchKit and HealthKit come into play.
HealthKit is Apple’s other health-data platform for developers. The app is a dashboard for personal health data aggregated from the more than 130 HealthKit-compatible apps and gadgets that track your sleep, weight, calorie intake, blood pressure, and more. And it’s that data, anonymized by algorithms developed by Sage Bionetworks, the open science nonprofit Friend founded in 2009, that will feed directly into ResearchKit apps.
“It would be pretty hard to do medical research without HealthKit,” said Eaun Ashley, one of the Stanford University investigators behind myHeart, the ResearchKit app that tracks cardiovascular health. “You could do questionnaires or figure out simple uses for the [iPhones] sensors, but without biomedical sensors, it would be much more limited."
One big impact ResearchKit could have, if it succeeds, is giving individuals access to information about their bodies that has until now been walled off from them by doctors.
Plus, with ResearchKit, users can choose to make their health information available two ways: just with the organizers of the study they're participating in or more broadly, with qualified researchers worldwide. As of last week, roughly three-quarters of people who had downloaded the apps had chosen to make their data broadly available to scientists, according to Friend. “That’s what’s fundamentally going to shift the world,” he says. “The most benefit that will come out of this is not the person’s question that generated the study. It’s someone later. It’s the unasked questions that you hadn’t anticipated that…[will] open the spigots."
The democratized vision Friend and Apple have for the future of medical research is noble. But its success hinges on factors that are beyond his control. Will iPhone users use ResearchKit and HealthKit consistently enough to generate the volume of data scientists need? Is the group of people that owns iPhones representative of the population as a whole? Or can ResearchKit only work when it's also available on Android, too?
To succeed in a big way, ResearchKit will have to reassure privacy-minded users that their data will be secure, and make nice with regulators like the FDA, who will have to sign off on any clinical trials resulting from the data collection. But already, health researchers are salivating at the idea of unlocking such a huge trove of data.
“The impact on drug R&D is hard to fathom because it's so mind-boggling,” said Bernard Munos, the founder of the Innothink Center for Research in Biomedical Innovation. “It really looks like a fantastic step forward."
Tomasz Sablinski, the CEO and cofounder of drug-development company Transparency Life Sciences, agrees. "This is good, and much needed," he said of ResearchKit. "As with the adoption of open-source in other sectors of the economy, most notably software, it will facilitate creation of multiple businesses in the space."
The ultimate step forward for health data collection would be a technology that allowed us to open-source our health data entirely, as other projects on the web, like OpenSNP and Harvard's Personal Genome Project, are already doing. But Apple's new research platform is a promising first step toward creating a more open, more democratic, and potentially more helpful medical research system—one that relies less on printed flyers tacked to bulletin boards, and more on the multi-sensor super-computers we all carry around every day.
Daniela Hernandez is a senior writer at Fusion. She likes science, robots, pugs, and coffee.