We’ve already seen the potential of Apple’s ResearchKit platform to sign up large numbers of participants to medical studies in an incredibly short time, but a reported conversation between the founder of an open science non-profit and an Apple VP suggests that the potential goes far beyond this.
Fusion, in an extensive profile, reports that Apple may be intending to collect anonymised health data in a central database accessible to medical researchers around the world, enabling each to benefit from that shared data to forward their own studies. The vision was initially put forward at a conference back in September, long before ResearchKit was announced, by Stephen Friend, the founder of Seattle-based Sage Bionetworks, a nonprofit that champions open science and data sharing.
Apple reportedly took an immediate interest in the idea …
“Imagine ten trials, several thousand patients. 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.” In this scenario, Friend said, patients would be able to control who could access their information, and for which purposes. But their health data would be effectively open-sourced.
Mike O’Reilly, Apple’s VP for medical technologies, was at the conference.
After Friend’s talk, O’Reilly approached the doctor, and, in typical tight-lipped Apple fashion, said: “I can’t tell you where I work, and I can’t tell you what I do, but I need to talk to you.”
Friend is said to have made “frequent trips to Cupertino” following that conversation.
While there will always be unease about the security of shared medical data, Bernard Munos, founder of the Innothink Center for Research in Biomedical Innovation, believes that Apple may be in the perfect position to champion the approach.
Friend agrees.
“No one wants to entrust their health data to a company that’s going to sell them to the highest bidder, and the highest bidders usually include the worst privacy abusers. Apple has taken a very principled stance,” Munos added. “It’s the kind of reassurance people need.”
It’s not clear whether this meeting is what led to the development of ResearchKit, or whether Apple was already working on it and saw the potential for expanding the idea. Apple, of course, won’t say, but if this happens, it has the potential to transform the way in which medical research is performed. Fusion’s entire report is worth a read.
Companies like Google and Facebook “make their power by selling data…They get people information about other people,” Friend told me. “Apple has said, ‘We will not look at this data.’ Could you imagine Google saying that?”
Apple first announced ResearchKit at its Spring Forward event in early March, with five apps enabling people to participate in studies for asthma, Parkinson’s disease, diabetes, breast cancer, and cardiovascular diseases.
