Open-source competitors must 'break open' patient health data

A movement is needed to “break open” how patient data can be collected and used, and patients can no longer be passive players when it comes to their personal information, according to John T. Wilbanks and Eric Topol.

Silicon Valley’s role in healthcare is changing rapidly, and more healthcare experts are moving out West to bring their expertise to companies like Google and IBM. These companies can collect giant amounts of data in minutes, and can control how that data is used, Wilbanks, M.D., chief commons officer at Sage Bionetworks, and Topol, a cardiologist and director of the Scripps Translational Science Institute, write in a commentary for Nature.

That, they say, can cause digital profiling, which could increase pre-existing biases.

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“If the citizens being profiled are not given their data and allowed to share the information with others, they will not know about incorrect or discriminatory health actions--much less be able to challenge them,” write Topol and Wilbanks.

Advances in health technology are, of course, leading to many improvements in care and population health, they note. However, “it is telling that the early players in the game have sequestered information in 'closed loop' systems.”

That must change, according to the authors. There must be open-source competitors in order to regulate closed business models, they write, and those networks of open projects need the support of patients.

“[A] worldwide knowledge resource could soon be used to identify the best course of treatment for an individual on the basis of the experiences of millions,” they write. “This resource will never be built unless each of us takes responsibility for our own health and disease. ... When it comes to control over our own data, health data must be where we draw the line.”

Topol previously has pushed for a new data ownership model: the “UnPatient.” A patient’s ownership of his or her health data is a civil right, he said alongside Leonard J. Kish of Unpatient.org last year.

Former National Coordinator for Health IT Farzad Mostashari also is leading a movement on patient data ownership through his Get My Health Data initiative.

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