Privacy: Preventing Harm or Innovation?
By Ana Santos
Privacy is an ambiguous, powerful concept that, while meant to protect, can shut down meaningful conversation and innovation.
SATURDAY, Sept. 26 – The topic of privacy was everywhere at Medicine X 2015. While it is a given that patient data should be protected, some took it a step further and asked if patients should be protected from their own data. Still others, like Dr. Eric Topol, advocated for the democratization of medicine through data transparency. Today, an interdisciplinary panel discussed the meaning of privacy in health care, its nuances and practical applications, while urging the MedX community to reimagine health systems through the lens of trust, freedom, and discovery.
Right off the bat, mediator Pamela Ressler, founder of Stress Resources, showcased the inclusive nature of Medicine X: “this panel evolved from a very provocative question posed during a panel last year, which asked us to consider if we needed to reframe privacy—is it less about secrecy and more about control of information?” She then invited the author of the statement, Brandeis University PhD Candidate Jodi Sperber, to join her on stage. Sperber, whose research explores online health communities based on Twitter and patient centered care, was an incredible addition to the panel, as she tapped into the expansive collective knowledge of social networks to inform and guide the discussion.
Panelist Susannah Fox, the newly appointed Chief Technology Officer for the United States Department of Health & Human Services, was able to bring some legal perspective to the table, as many laws regulate the privacy of medical information. And while they offer some protection, on the whole they operate more to ensure the flow of information throughout the health care industry than to ensure the privacy of individuals. She said, “The government’s role in health data is to provide the ‘wheat,’ the raw materials. But it’s up to all of us to take that wheat and make it into bread—to make it useful.”
Fox was also poised about the potential harm of over-sharing, “If you have a life-changing diagnosis, you put aside your concerns and you share, because it could help yourself and potentially save other lives. And yet, I would urge all of us to be mindful of what the legal effects could be. We must be mindful of legal consequences,” she stressed. While agreeing with Fox, Colleen Young, Community Consultant for Mayo Clinic, made the point that “for many patients, desperate times call for desperate measures. They go online and what they get back from it trumps their concerns about privacy.” In her view, that is a “privacy calculus that everyone makes,” and “sharing has shown not to only move a needle, but actually save lives. They’re forging radical changes!”
On the medical side, Dr. Wendy Sue Swanson, physician and well-known blogger, brought with her the struggle to balance “the need for sharing, nurturing support, while respecting patients privacy.” As a public person, Swanson receives many requests for advice on dealing with the overflow of personal information online. “But privacy is not a binary thing, it is a spectrum,” she said, “and all of us live in different places on that spectrum.” She stressed the importance of exercising “control over what we want to share and how much are we are wiling to share.”
Finally, Pamela Ressler closed the panel challenging the audience to reimagine the concept of privacy, as she noted just how amorphous it can be. She invited the MedX community to think broadly, deeply –and perhaps differently– about the topic. The panel may have ended on the stage, but the discussion lives on, encouraging society to collectively build effective tools to tackle the challenges that are on the way.
Ana is an MA student at Stanford’s data-driven journalism program. She has extensive experience with reporting and corporate communications in her home country of Brazil and in Europe. Find her on Twitter at @anacrochas.