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Volume 4, Issue 2 (2016) Trust 2.0: Data Governance to Support Health and Discovery

New technologies have rapidly emerged to support collection and use of a wide variety of data from clinical, genomic, social and behavioral, environmental, and financial sources. Corporate and personal data are increasingly available for a number of purposes including business operations, quality improvement, and research, and it is critical to ensure high standards for privacy, security, and appropriate use of these data to preserve trust. Moreover, the rapid scientific and technical advances in distributed clinical research and genomics warrant further exploration of data governance for “big data” in multiple domains. Despite these rapid changes in the field, access to literature on health data governance is limited.

This issue, "Trust 2.0: Data Governance to Support Health and Discovery," shares lessons learned based on the experiences and perspectives of leaders and innovators who are working at the cutting edge of health data governance with the goal of generating broader understanding of governance issues, expanded, multi-disciplinary conversation, and spur more collaborative thinking among this quickly developing community.

Read AcademyHealth's press release about this special issue.

Read the guest editor's commentary.

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Bidirectional Data Collaborations in Distributed Research
Kevin Haynes, Nandini Selvam, and Mark J. Cziraky
Mar 2016, Vol. 4, Iss. 2

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Building a Governance Strategy for CER: The Patient Outcomes Research To Advance Learning (PORTAL) Network Experience
Andrea R. Paolino, Elizabeth A. McGlynn, Tracy Lieu, Andrew F. Nelson, Stephanie Prausnitz, Michael A. Horberg, David E. Arterburn, Michael K. Gould, Reesa L. Laws, and John Steiner
Mar 2016, Vol. 4, Iss. 2

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Extracting Electronic Health Record Data in a Practice-Based Research Network: Lessons Learned from Collaborations with Translational Researchers
Allison M. Cole, Kari A. Stephens, Gina A. Keppel, Hossein Estiri, and Laura-Mae Baldwin
Mar 2016, Vol. 4, Iss. 2

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Software-Enabled Distributed Network Governance: The PopMedNet Experience
Melanie Davies, Kyle Erickson, Zachary Wyner, Jessica M. Malenfant, Rob Rosen, and Jeff Brown
Mar 2016, Vol. 4, Iss. 2

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Privacy, Fairness, and Respect for Individuals
Dixie B. Baker, Jane Kaye, and Sharon F. Terry
Mar 2016, Vol. 4, Iss. 2

GUEST EDITOR


John H. Holmes
John H. Holmes, PhD
Professor of Medical Informatics in Epidemiology
University of Pennsylvania Perelman School of Medicine