Session II: Approaches to Protecting Privacy & Confidentiality

2019 OHRP EXPLORATORY WORKSHOP

Session II:

Approaches to Protecting Privacy & Confidentiality

Speakers representing diverse stakeholders in the research enterprise will discuss policies, techniques, and technologies for controlled use, data protection, and informed consent as ways to protect individual privacy and data confidentiality. The goal of this session is to explore the challenges of privacy protection for health-related big data research conducted on a variety of platforms and in various settings. Panelists will also consider the ethical and practical challenges posed by data-sharing across cultures and boundaries.

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Moderator: Mark Barnes, J.D., LL.M.
Ropes & Gray, LLP
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Deborah Kilpatrick, Ph.D.
Evidation Health
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How one private company tackles privacy and confidentiality concerns with data collection, storage, and controlled access for research use of data generated through mobile technologies.


Andrew Shatto
Centers for Medicare & Medicaid Services
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A speaker from the Centers for Medicare & Medicaid Services will discuss their policies and practices on sharing data with diverse stakeholders to support meaningful research while protecting privacy.


Rebecca Li, Ph.D.
Vivli
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The challenges encountered and solutions implemented for protecting privacy and confidentiality of clinical research data on a shared platform that operates across geographical boundaries at Vivli, an independent global data-sharing and analytics platform for clinical research data.


Simson L. Garfinkel, Ph.D.
US Census Bureau
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The use of statistical methods including "differential privacy" to protect data.


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