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May 5 2015   1:56PM GMT

The duality of patient data: How do we keep it secure and free-flowing?



Posted by: adelvecchio
Data privacy, data privacy and security, Health Data Consortium, Health Datapalooza

booneGuest post by Chris Boone, Executive Director, Health Data Consortium

At the end of 2014, two reports that revealed conflicting consumer opinions about sharing health data and data security were released. Forbes, with data compiled by PwC’s Health Research Institute, reported that 70% of consumers were concerned about health data stored or accessed on their phones, and as many as 78% were concerned about the general state of medical data security.

In contrast, an NPR-Truven Health Analytics poll showed the opposite, with only 10% of respondents reporting that they worried about their employers having access to their health data, with 11% concerned with their doctors being able to view their records. Additionally, 14% were uneasy with hospitals having access to their data and 16% felt the same way about insurers.

Two major polls returning starkly contrasted findings within such a short time span is jarring, to say the least. The difference in results may simply be attributed to the two polls asking different questions but framing the conclusions in the same context. However, it’s just as likely that the reports highlight the ambivalent nature of consumers’ beliefs about health data privacy and sharing their health data for the greater good of public health.

This duality will be on display and up for discussion at Health Datapalooza 2015 in sessions such as “A Delicate Balance: A Town Hall on Health Care Data Privacy and Security Issues” and “But What if I Want to Share? Contributing Your Own Data to Foster Public Good.” The former session, to be moderated by Deven McGraw of Manatt, Phelps, & Phillips, LLP, will address the sensitive and personal nature of health data and the deliberations about ownership, stewardship, and terms of use needed to achieve a patient-centered, learning healthcare system. The latter session will be moderated by Niall Brennan, chief data officer of the Centers for Medicare and Medicaid Services, and will cover how to help patients share data that meets research needs while protecting and securing individual privacy.

In addition, as part of Health Datapalooza’s workshops, attendees will be able to participate in a “Privacy and Security Bootcamp” which will offer participants an opportunity to learn more about navigating the waters of federal privacy and security laws. This year’s Health Datapalooza will provide a forum for high-level, cross-sector conversations between patients, providers, innovators, entrepreneurs, government representatives, academics and healthcare technologists.

To be part of a conversation about shaping the future of secure, patient-centered health data access and sharing, join us at Health Datapalooza from May 31-June 3 in Washington, D.C.

About the author:
Chris Boone is Executive Director of Health Data Consortium. He is a recognized expert in health systems, health informatics, health IT policy, and the use of electronic clinical data to generate clinical and scientific evidence for public policy, quality improvement, and patient-centered outcomes research efforts.

Chris holds a bachelor’s degree in management information systems, a master’s degree in healthcare administration, and a doctorate in public affairs and health policy. Chris is also a fellow of the American College of Healthcare Executives.

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