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Patient Consent to Use of Data: Are We Asking the Wrong Question?

David Harlow (The Harlow Group LLC)
Data Liquidity Salon F
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In order to extract actionable insights from information aggregated from individual health records, health care “Big Data” initiatives rely upon access to patient data. Current rules and practices require that consent be obtained from the patient whose records are being analyzed (with certain exceptions). This often means that multiple consents must be obtained in order to carry out multiple analyses. In this session, we will discuss the ways in which the current system works well — and does not work well, and consider alternate approaches, such as changing the presumption to presumed consent (just as some countries presume consent to organ donation) and/or the “Rainbow Button” approach which could allow patients to opt in broadly to share data for specified ranges of uses. Less radical solutions will be considered as well. Other policy issues relating to data use will be considered as time allows.

Key takeaways will include:

- An understanding of the rights that third parties have to use patient data for various purposes

- A taste of alternative frameworks for ensuring appropriate levels of access to patient data

- An appreciation of the tension between the free flow of information and patients’ rights to have a say in how their data is used

Photo of David Harlow

David Harlow

The Harlow Group LLC

DAVID HARLOW is Principal of The Harlow Group LLC, a health care law and consulting firm based in Boston, MA. His twenty-five years’ experience in the public and private sectors affords him a unique perspective on legal, policy and business issues facing the health care community. David is adept at assisting clients in developing new paradigms for their business organizations, relationships and processes so as to maximize the realization of organizational goals in a highly regulated environment, in realms ranging from physician-hospital relationships to data privacy and security to facilities development to social media strategies to the avoidance of fraud and abuse. His blog, HealthBlawg, is highly regarded in both the legal and health policy blogging worlds. He is a charter member of the external Advisory Board of the Mayo Clinic Center for Social Media and the Public Policy Chair of the Society for Participatory Medicine. He speaks regularly before health care and legal industry groups on business, policy and legal matters. You should follow him on Twitter: @healthblawg.

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