The purpose of the Governance Toolkit is to share and discuss resources related on governance of health information. Tools, sample guidance documents, and practical approaches to common challenges are included, with the overall goal of advancing the national dialogue on governance issues of data and information for comparative effectiveness research (CER), patient-centered outcomes research (PCOR), and quality improvement (QI).
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Comparative Outcomes Management with Electronic Data Technologies (COMET) Data Access Agreement, Clete Kushida, Deborah Nichols, James Walsh, Kara Griffin, and Pamela Hyde
ImproveCareNow Network Participation and Data Use Agreement, Joan Gates, Chris Neff, and Richard Colletti
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
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
Accelerating Regulatory Progress in Multi-Institutional Research, Andrea Paolino, Sherry L. Lauf, Lisa E. Pieper, Melissa Goff, Jared Rowe, and Ileana M. Vargas
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
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
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
Pathways to Success for Multi-Site Clinical Data Research, Deven McGraw and Alice Leiter