Rethinking disruption: lessons from quantified self for the transformation of medicine

Gina Neff


The concept of disruption has become something of a mantra within data-driven health innovation. Eric Topol refers to technology’s ability to drive the the “creative destruction” of medicine (2012) and to social media as turning “medicine upside down” (2015). Clayton Christensen and his co-authors have used disruption to talk about an “innovator’s prescription” for medicine (2008). Disruption itself has itself become a powerful way that Silicon Valley talks about the capacity of technology to change the social forces that slow industry growth or hinder innovation.  From Techcrunch’s “Disrupt” conference to medical school-sponsored hackathons, health innovators are adopting disrupt as word to describe the change they seek.

This talk argues against disruption. Surely something must change in health care, but is disruption the right way to talk about or frame this change? This presentation starts by defining the concept of disruption and sharing examples the contradictory ways the word is used to describe health innovation.  Next, I look at what model of change, or theory of change, that disruption presents in these examples. I argue that several of the theories of disruption underplay healthcare's unique challenges and strengths (large and complex organizations, a mix of government and private actors, a highly regulated industry, a drive for serving the greater good).  The work of the word disruption helps people to frame new technologies in terms of power--and particular social power or power within industries -- even as disruption purports to change, replace or “disrupt” those existing power arrangements. In other words, to say a technology can “disrupt”  healthcare is to say that it will change how power works in healthcare.  Two popularly held “effects” of disruption are democratizing power within healthcare and democratizing access to healthcare.  The challenge with disruption is that it often leaves undefined what--or who-- will fill the power vacuums left in disrupted industries.

As an alternative way of modeling innovation, this talk looks to concepts of intersections to account for how social and cultural change can happen alongside technological change in U.S. healthcare. To demonstrate this model, we look at how the Quantified Self community has worked at the intersection of patient-driven innovation and the technology industry. This talk presents findings from three years of sociological qualitative field research from the Quantified Self community and with doctors around new forms of patient-driven data -- examples from how people are talking about data-driven change in healthcare with a particular focus on empowered patients with data from consumer-grade electronic devices like smartphones and activity trackers. These include low-risk, general wellness devices that the FDA has chosen to exercise enforcement discretion. The Quantified Self community is at the center of disruptive technologies in health care and yet they argue for transparency, openness, and access --values that run counter to theories of disruption. Lessons from the Quantified Self community can help teach health innovators a new language and model for technology innovation for the public good. 

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