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The Pennsylvania Convention Center

Jun 14, 2026 7:00 AM - Jun 18, 2026 3:00 PM

1101 Arch Street, Philadelphia, PA 19107, USA

DIA 2026 Global Annual Meeting

Patient-Directed Data Sharing: Enabling Innovations While Including Patients in Decisions about Secondary Data Use

Session Chair(s)

Karla  Childers, MS

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 : Understand 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

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