Health Data Governance Challenges Explored in New Special Issue of eGEMs

Health Data Governance Challenges Explored in New Special Issue of eGEMs

Washington D.C. (3/31/2016)—Today, AcademyHealth’s peer-reviewed open access journal, eGEMs, released its latest special issue, Trust 2.0: Data Governance to Support Health and Discovery.

Guest Edited by John H. Holmes, Ph.D., Professor of Medical Informatics in Epidemiology from the University of Pennsylvania Perelman School of Medicine, eGEMs’ newest special issue shares the experiences and perspectives of leaders and innovators who are working at the cutting edge of health data governance. “This collection of eGEMs papers illustrates data governance complexities, challenges, and opportunities, particularly in the context of the current health systems landscape and the health research enterprise,” said Dr. Holmes.

The eight papers in this issue address the ongoing challenges of data governance in health care and research, particularly given the ways research, quality improvement, and operational analytics are increasingly integrated. The papers include national and policy leadership perspectives, case studies in governance on local and national levels, and discussions on the growing importance of patient engagement and shared decision making.

“Good governance is all about trust. And trust is the cornerstone of efforts to engage patients, providers, and other key stakeholders working together to build learning health systems”, stated Electronic Data Methods (EDM) Forum Principal Investigator and eGEMs Editor-in-Chief Erin Holve, Ph.D., M.P.H., M.P.P. “This new issue demonstrates our ongoing commitment to publish papers on health data governance that advance the national dialogue regarding both the aspirational and pragmatic aspects of governance.”

Published Papers in this issue include:

• Bidirectional Data Collaborations in Distributed Research (Haynes)
• Building a Governance Strategy for CER: The Patient Outcomes Research to Advance Learning (PORTAL) Network Experience (Paolino et al)
• Ethics Issues Arising in the Transition to Learning Health Care Systems: Results from Interviews with Leaders from 25 Health Systems (Morain et al)
• Extracting Electronic Health Record Data in a Practice-Based Research Network: Lessons Learned from Collaborations with Translational Researchers (Cole et al)
• Software-Enabled Distributed Network Governance: The PopMedNet Experience (Davies et al)
• The Future of Patient Engagement in the Governance of Shared Data (Petersen)
• Privacy, Fairness, and Respect for Individuals (Baker et al)
• 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 (Doshi et al)
• Privacy, Security, and Patient Engagement: The Changing Health Data Governance Landscape (Holmes)

AbouteGEMs
eGEMs (Generating Evidence & Methods to improve patient outcomes) is a peer-reviewed, open access journal that seeks to accelerate research and quality improvement using electronic health data. The EDM Forum launched eGEMs in 2013, and the journal has since published more than 100 papers featuring cutting-edge projects from leaders in the field. eGEMs is led by an editorial board of experts from across the country and is a premier journal for approaches to redesigning the health system, including methods, interoperability, and governance. Visit the eGEMswebsite and follow us on Twitter to learn more about the journal, how to submit a manuscript, or to serve as a reviewer.

The EDM Forum is supported by the Agency for Healthcare Research and Quality (AHRQ), Grant 1U18HS022789-01.

About AcademyHealth
AcademyHealth is a leading national organization serving the fields of health services and policy research and the professionals who produce and use this important work. Together with our members, we offer programs and services that support the development and use of rigorous, relevant and timely evidence to increase the quality, accessibility, and value of health care, to reduce disparities, and to improve health. A trusted broker of information, AcademyHealth brings stakeholders together to address the current and future needs of an evolving health system, inform health policy, and translate evidence into action.