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Patient-Directed Data Sharing: Enabling Innovations While Including Patients in Decisions about Secondary Data Use
Session Chair(s)
Karla Childers, MS
Vice President, Bioethics, Policy & Partnerships
Johnson & Johnson, United States
We’ll review the history, laws, and policies of the current data sharing environment. We’ll discuss ethical considerations for why the typical approach to consent and deidentification of data hinder trust and innovation. We’ll give a case study of pa
Learning Objective : Describe the history of data sharing and the laws and policies that have informed it; Discuss the ethical considerations for shifting our mindset about data access permissions; Apply a patient-directed mindset to data access to unlock innovation and improve data utility
Speaker(s)
Panelist
Mary Gray
Microsoft Research, United States
Senior Principal Researcher
Panelist
Aaron Leibtag
Pentavere, Canada
CEO
Panelist
Sarah Chamberlin
flok, United States
Founder and Chief Program Officer
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