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.
“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.
Apple reportedly took an immediate interest in the idea …
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.
“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.”
Friend agrees.
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?”
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.
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.
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I can actually imagine Google doing it in such a way that doesn’t involve their date – by using their Health foundation initiative.
Generally, so far what is doing is pretty flimsy from a medical perspective but it’s an interesting thing and I’m sure WATCH Gen 2 may end up using this to get things authorised to their own benefit I.e. their blood pressure through Cuff-less solution using Pulse transit time (like the Scanudu Scout, competing for the XPrize) needs to be approved before it can be used in a commercial diagnostic context. If they use trial data thought initiatives like their research kit framework they can release the product and have participants. Again, like the Scanudu Scout.
….yes….flimsy…that’s exactly the what the university’s currently participating have said….
Hardware? Even if they could incorporate blood pressure, how does that assit diseases unrelated to cardiovascular health? It’s not productive to spend R&D in buliding hardware if it’s going to be unrelated to my health. It would be a useless feature. Apple understand that they can’t monitor every vital, but to suggest that providing a framework and reach is flimsy is ignorant on so many levels.
Its entirely up the researchers to embrace smart technology into existing monitoring devices and enable comunications with there reaseath app. Take the Asthma Health App. They’re giving out bluetooth enabled devices to assist with the collection of air quality.
I am currently working on my PhD, I do a lot of research in HIV. We are already looking at how we might be able to use ResearchKit in our data collection. A shared database like this would be huge!
Off the back of a Neuroscience open evening of talks from multiple disciplines, covering Parkinsons Disease, Stroke, Alzheimers and Epilepsy – the usefulness of proactively getting exercise to an ageing population is going to be a *huge* deal for healthcare pretty darn soon.
Proactive prophylactic exercise will save millions if governments and societies wise up to the need for it.
And the tech they’re using to monitor patients? It’s starting to show promise – older current generation tele healthcare kit is shocking by comparison – done right this could be useful for both patient, HCP, patient family and society.
Bear in mind that while currently the researchers may be using Android or iPhones, iPads or Android tablets for their apps and research – they don’t need to in the future necessarily… The $69 ATV that is going to become the hub for HomeKit could work directly with the devices used potentially. The capabilities brought by the upcoming tech and apps is definitely being gratefully used from what i’ve seen first hand. How does a GP or HCP review 6 months data in a short appointment? Well – if it’s collected, collated and decently able to be reviewed, then this will help.
It might seem slow – but slow progress is the name of the game – and Apple does work on multiyear plans for the introduction of tech as Tim Cook has mentioned. The tech sphere, developers, researchers have the opportunity to really improve things.
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Adopting open source principles may be a huge game changer for medical research.