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The Brave New World of Precision Medicine

The Brave New World of Precision Medicine

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This month, Apple (with help from high-level collaborators) puts the future of personalized health in the palm of our hands.

Apple celebrated its 40th birthday on April 1st. The company’s April Fool’s inception date has always felt like powerful subtext from Woz and Jobs (Steve Wozniak and Steve Jobs). A warm, conspiratorial wink: evidence of the smart, wry wit that made old-school Palo Alto — and the digital revolution — what it is today.

In 2016, this wink ushers Apple into its fifth decade. According to CEO Tim Cook and COO Jeff Williams during a Town Hall special announcement in Cupertino on March 21st, 2016, it also ushers Apple into a brand new business category: precision medicine.

What’s precision medicine? Through the lens of Apple innovation, it’s a radical reframing of healthcare. A bold next step in research that simultaneously heralds a sea change in targeted, responsive, personalized care.

Medical Research, Amplified

It began quietly last year with ResearchKit, an open-source framework developed by Apple for building web and mobile apps. The goal was simple: innovate and improve medical research. To accomplish this, in 2015, Apple released ResearchKit to 24 of the world’s most respected research institutions — among them UCSF and Stanford Medicine. What happened next, according to Williams, is nothing short of a quantum leap.

Because ResearchKit is deployed digitally, it’s not confined to a geo-located test facility. Test subjects that would normally have been unreachable found it easy to opt in and participate. Right out of the gate, the platform delivered to researchers study groups that were not only larger, but more varied than ever before.

But it wasn’t just a numbers game. Test groups also covered a wide range of geographies and relative contexts. Because the data was contextual (gathered within a life in motion), study findings led to unparalleled insights almost immediately. Data was also gathered daily — in some cases hourly — which further amplified the research. Taken together, these capabilities created a cumulative power that hasn’t been possible at this scale until now.

This kind of power quickly snowballs. As information increases, it becomes more objective. Larger, more objective data-sets in turn reveal new correlations — the kind that lead to game-changing epiphanies.

According to Apple, this has already proven out in ResearchKit pilot projects. Mass General (Massachusetts General Hospital — Harvard Medical School’s largest [and original] teaching hospital, and a ResearchKit initial developer) discovered there are subtypes within Type 2 diabetes. Meanwhile, Manhattan’s Icahn School of Medicine at Mount Sinai Hospital utilized ResearchKit to unearth new insights on asthma triggers across all 50 states. What flows from these findings could lead to novel therapies, revolutionary new drugs, or eventual treatments based in nanotech and other cutting-edge technology.

Meaningful User Experience Creates Real Life Value

Where it really gets interesting from an Emerge perspective is CareKit. Focused on the patient experience, and launched by Apple on March 21st 2016, CareKit takes ResearchKit to the next level, transforming it from a research platform into a tool for personalized care. Three things that will make CareKit so powerful are reach, strategy, and design.

As Tim Cook proclaimed at the top of the Town Hall, there are more than a billion Apple devices in use worldwide. A lion’s share of that penetration comes from mobile. But mobile or not, our devices have become an extension of ourselves. And when it comes to our phones, no device yet is as deeply, intrinsically personal.

Based on Apple’s announcement materials, Williams’ short demo during the Town Hall, and the legacy of Apple’s design ability to take the complex and make it simple, CareKit appears to hit three important, strategic guardrails: make it easy, make it personal, and make it move me.

At Emerge, we see these three drivers as the foundational components of powerful, human-centered design. Meaning, when an experience contains all three factors — when it’s intuitive, relevant, and meaningful for the user — that experience has the power to provide real life value. These core tenets are especially crucial in healthcare, where the Internet has spawned a savvy new animal — the hybrid patient/consumer. This hybrid user trusts personal experience and peer reviews as much as they trust a provider. They’re also informed and engaged. Motivated and able to research and comparison shop, the patient/consumer (if satisfied) is also prone to brand loyalty. Meaning, in a hyper-connected, highly competitive marketplace, only performance, relevance, and a seamless experience combined will ignite the fire of widespread adoption.

The above, taken alongside Apple’s March 21st unveiling of maiden apps like mPower, Autism & Beyond, and EpiWatch, could open the door to incredibly swift mass adoption in the category.

For instance, mPower, an app developed in a partnership between the University of Rochester and Seattle-based nonprofit Sage Bionetworks, allows Parkinson’s patients to closely monitor — and modify — their condition across any given day. Duke Health (Duke University Health System) and the University of Cape Town’s Autism & Beyond app enables autism screening years earlier than current diagnoses, which can ensure better treatment earlier for the child, and greater understanding for (and resulting care from) parents. And EpiWatch, developed by Johns Hopkins University, is a first-in-category Apple Watch app that collects physiologic data during seizures. Researchers hope to someday develop a seizure detector from the app’s aggregated data.

Personalized Medicine … for All

These are only CareKit’s first-year forays. It’s not hard to imagine the potential advances within and outside of the Apple-verse. Much of this will be innovation that addresses accessibility — another of Emerge’s guiding principles. With more minds, more perspectives, more unfamiliar thinking at the table, innovation becomes easier. In this way, accessibility becomes a necessity in tackling the formidable global, social, and environmental issues of our time. The inclusivity alone that can be gained via tech could itself herald unprecedented advances.

On the performance level, we’ll no doubt see apps or neural devices that aid simulated sight, an AR offering that brings environmental sound-cues to the deaf, an exoskeleton that allows paraplegics to walk, or special peripherals that will see VR making good on its long held promise to innovate within therapeutic and quality-of-life categories. Each of these advances will stir important cultural questions about ability, “dis”ability, our inherited and unexamined biases, and the meaning of health itself. Our collective dialogue will have to openly encompass the benefits and detriments of blanket tech-adoption, as sometimes the latter can destroy a rich and thriving culture, such as that of the deaf community, among others.

Regardless, the future of medicine is already here. And with it comes an overgrown rose-hedge of serious, ethical questions.

The True Price of Control

Take Johns Hopkins’ EpiWatch, above (though the following exercise applies equally to any of the aforementioned innovations). In Apple’s sizzle video, epilepsy patient Shaina Mims talks about her fear of having a seizure while being by herself, or while driving. Mims shares, “They’re trying to find a predictor. Having that would be amazing because I would know, ‘Hey, this is gonna happen. You have plenty of time to get to safety.’ It’s like, ‘I got this.’”

In this case, a predictor app would transmute fear into knowledge, and from there, control. Powerful control for people like Mims. But what exactly is the measure of that control? Who is collecting the data? Who has access — now, and in the future? How many gates are hidden, and who holds and distributes the keys? Where’s the data stored, and how is it protected? … The questions are myriad, urgent, and timely. Very timely, given the standoff between Apple and the FBI this winter.

The stage was set when two young terrorists — Syed Rizwan Farook and Tashfeen Malik — shattered a holiday party in San Bernardino on December 2nd, 2015. The couple was killed by police in the ensuing mêlée. Shortly after, crime scene investigators found an iPhone in the terrorists’ rented vehicle — a device believed to house incriminating data. The phone, itself the property of Farook’s employer, was a vault of encrypted information locked behind a PIN that was more complex than a four-digit passcode. Not only would it have taken years, mathematically, to nail a PIN like this, but traditional decoding was thwarted by a feature that introduced time delays every time an incorrect PIN was entered. The FBI asked Apple to build a special version of the iPhone OS that would disable this feature. (The bypass OS would’ve been force-installed on the phone.) Apple objected, arguing they’d be building a metaphoric skeleton key that could unlock hundreds of millions of rooms. Unlocking one would be tantamount to unlocking them all.

On the surface, Apple’s stance is noble. A giant US tech company, protecting connected citizens. But as journalists and thinkers worldwide have posited, while the move was a popular brand maneuver, it sets a dangerous precedent indeed. Harry Halpin at the World Wide Web Consortium (W3C) lays it out clearly: tech giants govern access to our money, our digital possessions, and our data. By doing so, and by simultaneously issuing IDs that verify our identity, these companies co-opt certain functions that to date have been the sole terrain of government. Send that through the lens of Facebook, which makes money by selling its users’ data, and the accumulation of power becomes chilling. (Sci Fi writers have run this simulation in countless forms and numerous stories. None of them end well, until there’s revolution.)

We’ve been given a recess in this critical ethical debate. In news that broke on Monday, March 28th, 2016, the FBI announced it won’t pursue action against Apple. The feds attest they’ve gained access to the encrypted phone through an unnamed resource — a mysterious “third party”. What that means remains cloaked, and has sparked speculation.

Returning to Apple’s announcement, at the end of his opening remarks, Tim Cook promises “a word about privacy.” His distilled elaboration feels much like an Apple dialog box. Though reams of data, rafts of discourse, and massive ethical waves are pounding the breakwater, the alert displayed is as compressed, simplified, and open to interpretation as can be: Apple never expected to be at odds with the government. But the company will not shrink from its responsibility to protect customers, and country.

Engineering a Quantum Leap

Discourse and debate will ensue. But precision medicine is here, and it’s hurtling forward, with the help of Apple and others worldwide. In the UK, the NHS (National Health Service) is putting first-responder drones to work for Hazardous Area Response Teams — crews that deal with medical emergencies involving nuclear, chemical, and biological materials. The NHS is also building a technological infrastructure intended to empower patients with access to records, and promises a new generation of portable, home-based medical equipment. In Australia, researchers at the University of Melbourne have gained support from the Bill & Melinda Gates Foundation to build a system that lets anyone with a smartphone or tablet issue a death certificate — one that can parse the cause of death. In poor and remote countrysides, where doctors are few, cause of death is difficult to determine. Yet cause of death is essential to public policy and the managing of a country’s health system. An app like this fits perfectly within the Gates Foundation’s vision and portfolio, as it’s something that makes a qualitative difference.

All of these advances point to an important realization: medical authorities around the world agree that the future of healthcare won’t be possible with incremental change. Dr. Helen Link Egger, a researcher at Duke Health, echoes this sentiment. In Apple’s promotional video, Dr. Egger states, “We’ve gone as far as we can with traditional research.” Capturing the grounded wonder appropriate to Apple’s new platforms, Egger concludes, “We can now do this science, we can do this medicine, with a phone.”

Innovation, like any creative process, follows the same pattern as evolution itself. Incremental change is the rule, but it can only take a system, a species, so far. To achieve a radical shift, it takes punctuated equilibrium — long periods of seeming stasis, disrupted by a leap. A jump. A quantum shift to the next level. This April, in the budding field of precision medicine, a leap might be in store, thanks in part to a company born on the day of the fool, introducing a platform that’s no joke at all. Tech that’s actually as serious as a heart attack, averted.

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