Readers React: Sharing healthcare data not as easy as it sounds


To the editor: The article on Big Data’s potential to improve healthcare overlooks a fundamental problem: Many of the institutions that hold our most valuable health data are reluctant to share them with one another. (“Big data, meet big money: NIH funds centers to crunch health data,” Oct. 9)

In the course of conducting an academic study of Big Data in the healthcare industry over the past year, I interviewed researchers, doctors and entrepreneurs who described this problem in starkly simple terms: Big Data’s potential to improve human health requires the large-scale aggregation of medical data, they explained, but individual data holders face powerful disincentives to collaborate.

Hospitals are reluctant to share data that reflect poorly on their quality of service; pharmaceutical companies closely guard data that could reduce the value of existing or future intellectual property; academic researchers rarely share data that can fuel publications.


Policymakers and the public must grapple with this problem. If we cannot overcome the challenges of coordinating our institutions, we may never solve the urgent mysteries of disease.

Michael Mattioli, Bloomington, Ind.

The writer is an associate professor of law at the Indiana University Maurer School of Law.

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