Season 1: Episode 9

Citizens, Customers or Patients? John Wilbanks Health + Data Shared

I went both wide and deep in my recent discussion about the shared economy of health data with John Wilbanks, Chief Commons Officer of Seattle-based nonprofit Sage Bionetworks. For the last two decades, he has been chasing the intersection of science, policy, and technology, with the ultimate goal of shaping how we access health services and where sharing data fits with improving and extending our lives. His particular fascination has been primarily on informed consent to accelerate learning, sharing and living well.


Lately, whether the topic is music, food, or health, my conversations have revolved around the growing tensions between an individual and industry. How are instigators shaping our new SocialOS? For John Wilbanks, that tension lies between the benefits of free-flowing data and the power of the individual. In an age where advertising is targeted and personalized, John aims to create a health marketplace that we can benefit from and adapt to the digital age. Contemporary and ethical informed consent is critical to his vision of a world where people are not just customers, but citizens of their health. Time is of the essence: it is up to us to “build something that works and is ethical, before businesses build something that works but is unethical.”

Throughout the course of our dialogue, John provided a framework for people to fully grasp what’s at stake, what we can reasonably demand, and what we can potentially gain. Visions of the future tend to be framed negatively, as it is much easier to talk about the dystopia you want to avoid than it is to talk about the ideal future you want to create. John’s vision for the future, however, is realistically optimistic: he sees the opportunity to create a shared economy of health data that has positive consequences for society and consistently engaged, enthusiastic individuals alike.

I ended by asking John what we can do to move the needle in his favor. He stressed the importance of a middle ground between those of us who are pro-disruption and anti-regulation, and the technophobic. Too often, we as instigators embrace new technology without stopping to demand better for fear of being seen as anti-technology. John challenges us to request change when we invest and join boards, to insist on being treated as citizens, rather than customer.

Image credit:

World Tai Chi Day by Brian Robinson, Creative Commons 4.0.

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