There were a lot of things to get excited about during Apple’s Keynote ’15 this past Monday. Apple Watch.(1) The new Apple store in China. The gorgeous new MacBook. But the one thing I really got fired up about more than anything else was ResearchKit.
ReseachKit is a software framework that Apple developed that can turn every iPhone into a device for collecting medical data. At the Keynote, Apple showed off five apps created together with some impressive partners: The Ichan School at Mount Sinai, Oxford, Stanford, UCLA…the list goes on. The apps so far are targeted at research in the fields of asthma, Parkinson’s, great cancer, diabetes, and cardiovascular disease. Each of the apps can help in the diagnosis of particular health problems and assist in gathering data for researchers. It’s a little bit like how Batman turned every device in the city into a spy-phone in his obsession to find the Joker. But, you know, for a less questionable cause.
Anyway, as far as apps go, that all sounds rather mundane, right? Why would I download the Parkinson’s app unless I have Parkinson’s? I mean, if you’re not a researcher, who cares?
I am not a researcher. But what I am is a care-taker for someone with cystic fibrosis. Let me tell you why ResearchKit matters to me.
My wife was born in 1982.(2) Cystic fibrosis research at that time was barely beyond its infancy, so much so that her parents had to visit several doctors to get her diagnosed. CF wasn’t understood but, worse, wasn’t accepted as a valid diagnosis amongst many in the medical community. But the few people who accepted it and the even fewer people who researched it worked together so that, a few years after she was diagnosed, there were treatments available. CF affects the digestive system and the respiratory system. As a child, her problems were mostly digestive. In time, there were medications. When she began having respiratory problems, there were medications and treatments for that, too.
None of those medications and treatments would have existed if not for medical research. In fact, a fairly solid case can be made that had she been born just one year earlier, she wouldn’t have lived. Many of the people she knew from her extended hospital stays – most of them older than her – passed away before they were twenty-years-old. Some of the seminal CF research, the research that lead to medications and treatments, were published in the early 1980s, even those the disease was recognized in the late 1950s.
The genetic marker for CF(3) was found in 1988, after which the world’s understanding of CF’s pathophysiology allowed for the development of medications to address the symptoms.(4) But it also laid the groundwork for the discovery of over one thousand mutations. This wide variance of mutations has yet to be cataloged w/r/t the varying symptoms and pathologies simply because of the number of mutations, the number of people, and the comparatively small resources of the medical community.
Almost anyone with CF can tell you which mutation they have. Almost anyone with CF can tell you which symptoms they deal with most often. But, so far, only ResearchKit has the power to grab such a large sample of people and data and put it at the hands of capable researchers.
And let me tell you, that will save lives.
Furthermore, ResearchKit can gather the same types of data from people who don’t have CF, or, as I mentioned above, Parkinson’s. Why does this matter? Well, if you think back to sixth-grade science class, you might remember that with every experiment you need a control group. With ResearchKit, anyone with an iPhone can be in the control group. Do I have a vested interest in helping Parkinson’s research? No. Will I be in a control group to help with Parkinson’s research, especially since doing so requires almost no effort? Absolutely.
Because for every CF caregiver like me, there’s a Parkinson’s caregiver out there. Our experiences will be different in kind, but similar in effort. I am just as on-board with helping the caregivers as I am with the patients.
Oh, and you know how I said “anyone with an iPhone” back there? That’s not true. Apple made ResearchKit an open source software,(5) so anyone on any platform can get in on it and help out. Brilliant. Just brilliant.
But don’t take it just from me. Here’s a bit from MacRumors that you can read, but I’m going to excerpt the coolest part. After waking up Tuesday to discover 10,000 people because using the MyHeart Counts app, Alan Yeung, medical director of Stanford Cardiovascular Health, said:
“To get 10,000 people enrolled in a medical study normally, it would take a year and 50 medical centers around the country. That’s the power of the phone.”
And the power of ResearchKit, I might add. Yeah, maybe it’s not a flashy, super-thin notebook or a $10,000 watch,(6) but it’s the most exciting thing Apple announce on Monday. And I dare say it’ll put the greatest dent in the universe.
- Which I’m excited about because I’m an Apple Fanboy, but confused about how I feel in general. That’ll merit a whole ‘nother blog post when I have more time.
- And let’s hope she forgives me for telling you all her age.
- It’s a genetic disease, caused by a mutated gene (delta-F 508). The gene produces a faulty protein which doesn’t fold properly and therefore cannot escape the endoplasmic reticulum. Tragically, this is a protein that helps cells transfer water and chlorine, and the subsequent build-up results in extra-think mucus in endocrine glands. Over time, the mucus will build up and, in the case of the lungs, cause unrecoverable blockages that lead to lung-function decline and, eventually, shutdown.
- But, tragically, not the cause.
- Seriously, has Apple ever made anything open source?
- Ugh. Just…ugh.