Resources that discuss or are relevant to the policies and procedures that oversee data stewardship and management of data linkage, aggregation, storage, acquisition, and use of data are welcome.

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Submissions from 2017

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A Primer to the Structure, Content and Linkage of the FDA’s Manufacturer and User Facility Device Experience (MAUDE) Files, Lisa Garnsey Ensign and K. Bretonnel Cohen

Submissions from 2016

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Privacy, Fairness, and Respect for Individuals, Dixie B. Baker, Jane Kaye, and Sharon F. Terry

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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

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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

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Data, Data Everywhere, But Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-level Health Care Data in the United States, Jalpa A. Doshi, Franklin B. Hendrick, Jennifer S. Graff, and Bruce C. Stuart

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Bidirectional Data Collaborations in Distributed Research, Kevin Haynes, Nandini Selvam, and Mark J. Cziraky

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Privacy, Security, and Patient Engagement: The Changing Health Data Governance Landscape, John H. Holmes

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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

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The Future of Patient Engagement in the Governance of Shared Data, Carolyn Petersen

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Leveraging a Statewide Clinical Data Warehouse to Expand Boundaries of the Learning Health System, Christine B. Turley

Submissions from 2015

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EDM Forum Bibliography (September, 2015): Peer‐Reviewed Literature Using Electronic Health Data for System Improvement, EDM Forum

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eGEMs Instructions for Authors, EDM Forum

Submissions from 2014

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Data Governance and Data Sharing Agreements for Community-Wide Health Information Exchange: Lessons from the Beacon Communities, Claudia Allen, Terrisca R. Des Jardins, Arvela Heider, Kristin A. Lyman, Lee McWilliams, Alison L. Rein, Abigail A. Schachter, Ranjit Singh, Barbara Sorondo, Joan Topper, and Scott A. Turske

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Data Governance and Data Sharing Agreements for Community-Wide Health Information Exchange: Lessons from the Beacon Communities, Claudia Allen, Terrisca R. Des Jardins, Arvela Heider, Kristin A. Lyman, Lee McWilliams, Alison L. Rein, Abigail A. Schachter, Ranjit Singh, Barbara Sorondo, Joan Topper, and Scott A. Turske

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The Keys to Governance and Stakeholder Engagement: The Southeast Michigan Beacon Community Case Study, Terrisca R. Des Jardins

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How a Beacon Community Program in New Orleans Helped Create a Better Health Care System By Building Relationships Before Technology, Anjum Khurshid and Lisanne Brown

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Learning from Health Information Exchange Technical Architecture and Implementation in Seven Beacon Communities, Douglas B. McCarthy, Karen Propp, Alexander Cohen, Raj Sabharwal, Abigail A. Schachter, and Alison L. Rein

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Accelerating Regulatory Progress in Multi-Institutional Research, Andrea R. Paolino, Sherry L. Lauf, Lisa E. Pieper, Jared Rowe, Ileana M. Vargas, Melissa A. Goff, Matthew F. Daley, Leah Tuzzio, and John F. Steiner

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Leveraging Health Information Exchange to Improve Population Health Reporting Processes: Lessons in Using a Collaborative-Participatory Design Process, Debra Revere, Brian E. Dixon, Rebecca Hills, Jennifer L. Williams, and Shaun J. Grannis

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Sustaining the Effective Use of Health Care Data: A Message from the Editors, Adam Wilcox and Erin Holve

Submissions from 2013

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Scalable PArtnering Network (SPAN) for Comparative Effectiveness Research (CER): Research User Interface Principles and Requirements, Jeffrey Brown, Arthur Davidson, Thomas E. Elliott, Jason Glanz, John H. Holmes, Pierre-Andre La Chance, Ella Lyons, Andrew McMann, Andrew F. Nelson, David L. McClure, Andrea R. Paolino, Marsha Raebel, Michael R. Shainline, Andrew T. Sterrett, David C. Tabano, Ileana M. Vargas, and Stanley B. Watson

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EDM Forum Phase I Publications and Products, EDM Forum

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Data Warehouse Governance Programs in Healthcare Settings: A Literature Review and a Call to Action, Thomas E. Elliot, John H. Holmes, Arthur J. Davidson, Pierre-Andre La Chance, Andrew F. Nelson, and John F. Steiner

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Data Warehouse Governance Programs in Healthcare Settings: A Literature Review and a Call to Action, Thomas E. Elliott, John H. Holmes, Arthur J. Davidson, Pierre-Andre La Chance, Andrew F. Nelson, and John F. Steiner

Poster Session - Governance, Kathleen Gallagher

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Scalable PArtnering Network (SPAN) for Comparative Effectiveness Research (CER): Purpose, Structure, and Operations, John H. Holmes, Andrew F. Nelson, Marsha A. Raebel, Jeffrey Brown, Arthur Davidson, Thomas E. Elliott, Steven Kelley, Pierre-Andre La Chance, Ella Lyons, Andrea R. Paolino, John F. Steiner, Ileana M. Vargas, Stanley B. Watson, and David L. McClure

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Pathways to Success for Multi-Site Clinical Data Research, Deven McGraw and Alice Leiter

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Pathways to Success for Multi-Site Clinical Data Research, Deven McGraw and Alice B. Leiter

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Governance, Andrea Paolino, Lisa Pieper, Carolina Herrera, Gerry Fairbrother, and Brian E. Dixon

Submissions from 2012

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Strategies for De-identification and Anonymization of Electronic Health Record Data for Use in Multicenter Research Studies, Clete A. Kushida, Deborah A. Nichols, Rik Jadrnicek, Ric Miller, James K. Walsh, and Kara Griffin

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Governance, Clete Kushida and Xiaoqian Jiang

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Protecting Human Subjects and Their Data in Multi-Site Research, Clete Kushida, Harold S. Luft, and Keith Marsolo

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Commentary : Protecting Human Subjects and Their Data in Multi-Site Research, Harold S. Luft

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Approaches to Facilitate Institutional Review Board Approval of Multicenter Research Studies, Keith Marsolo

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Governance, Deven McGraw, Kathy Kim, and Keith Marsolo

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Approaches to Using Protected Health Information (PHI) for Patient-Centered Outcomes Research (PCOR): Regulatory Requirements, De-identification Strategies, and Policy, Raj Sabharwal, Erin Holve, Alison Rein, and Courtney Segal

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CER Infrastructure Investments to Support Evidence Generation in a Learning Health System, Courtney Segal and Erin Holve

Events from 2011

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Data Governance, Bradley Malin and Deven McGraw