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Thinking ‘oat’ of the box: Technology to resolve the ‘Goldilocks Data Dilemma’

Marielle Gross
Robert Miller

By ROBERT C. MILLER, JR. and MARIELLE S. GROSS, MD, MBE

This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.

The problem with porridge

Today, we regularly hear stories of research teams using artificial intelligence to detect and diagnose diseases earlier with more accuracy and speed than a human would have ever dreamed of. Increasingly, we are called to contribute to these efforts by sharing our data with the teams crafting these algorithms, sometimes by healthcare organizations relying on altruistic motivations. A crop of startups have even appeared to let you monetize your data to that end. But given the sensitivity of your health data, you might be skeptical of this—doubly so when you take into account tech’s privacy track record. We have begun to recognize the flaws in our current privacy-protecting paradigm which relies on thin notions of “notice and consent” that inappropriately places the responsibility data stewardship on individuals who remain extremely limited in their ability to exercise meaningful control over their own data.

Emblematic of a broader trend, the “Health Data Goldilocks Dilemma” series calls attention to the tension and necessary tradeoffs between privacy and the goals of our modern healthcare technology systems. Not sharing our data at all would be “too cold,” but sharing freely would be “too hot.” We have been looking for policies “just right” to strike the balance between protecting individuals’ rights and interests while making it easier to learn from data to advance the rights and interests of society at large. 

What if there was a way for you to allow others to learn from your data without compromising your privacy?

To date, a major strategy for striking this balance has involved the practice of sharing and learning from deidentified data—by virtue of the belief that individuals’ only risks from sharing their data are a direct consequence of that data’s ability to identify them. However, artificial intelligence is rendering genuine deidentification obsolete, and we are increasingly recognizing a problematic lack of accountability to individuals whose deidentified data is being used for learning across various academic and commercial settings. In its present form, deidentification is little more than a sleight of hand to make us feel more comfortable about the unrestricted use of our data without truly protecting our interests. More of a wolf in sheep’s clothing, deidentification is not solving the Goldilocks dilemma.

Tech to the rescue!

Fortunately, there are a handful of exciting new technologies that may let us escape the Goldilocks Dilemma entirely by enabling us to gain the benefits of our collective data without giving up our privacy. This sounds too good to be true, so let me explain the three most revolutionary ones: zero knowledge proofs, federated learning, and blockchain technology.

Continue reading…

Health in 2 Point 00, Episode 60

Today on Health in 2 Point 00, Jess and I report from a hedgehog cafe in Tokyo. In this episode, Jess asks me about Bright Health’s $200 million raise and the significance of Amazon’s new EMR product. We also talk about Health 2.0 Asia-Japan, which is happening right now (December 4-5) in Tokyo, showing us the health care market outside of the U.S. Look forward to hearing from some great speakers at the conference, including John Bass from Hashed Health on blockchain, Fred Trotter on security, David Ewing Duncan on the new wellness and personalized medicine, and Adam Pellegrini from Fitbit. And, of course, Jess will be interviewing just about everyone—including a hedgehog—about innovation for WTF Health —Matthew Holt

WTF Health | Blockchain God Ted Tanner of PokitDok

THCB is thrilled to help launch a new interview series from Jessica DaMassa. It’s called WTF Health – ‘What’s the Future’ Health. Jessica is bringing you all some honest conversations about the future of health and how we love to hate WTF is wrong with it right now. Check out her first set of interviews from #HIMSS18 at www.wtf.health or stay tuned as she trots them out here.

I’m leading off with one of my favorites, Ted Tanner, Blockchain GOD and CTO of PokitDok. Here’s why you should watch Ted talk blockchain:

  • Best Part: On what blockchain does NOT do… “it doesn’t make unicorns cough up $100 bills” (approx. 7 min)
  • Why we need to look at blockchain as an ‘enablement platform’ that augments, not ‘rips and replaces’
  • Predictions for the future of blockchain as tech giants move in
  • How blockchain will be the next evolution of enterprise computing

Health in 2 point 00, Episode 15

Jessica DaMassa asks me about digital health funding, Walmart and PillPack, Blockchain and my sweater — not in that order, but all in less than 2 minutes. Bonus–Farzad Mostashari’s bow tie makes a twitter appearance! — Matthew Holt

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