data governance, data policy, learning healthcare system, distributed research network, PCORnet, Mini Sentinel, Open Data
Context: The rapid emergence of new technologies support collection and use of a wide variety of data from clinical, genomic, social and behavioral, environmental, and financial sources, and have a great impact on the governance of personal health information.
Papers in the special issue: The papers in this special issue on governance touch on the topic from a variety of focuses, including leadership perspectives, local and federal case studies, and the future importance of patient engagement.
Themes: This special issue focuses on three major themes—that data governance is growing in importance and presenting new challenges that must be addressed, that health care organizations must prioritize governance design, implementation, and functions as a priority, and that governance seems to be naturally converging on an archetype as described by this set of papers.
Future State of Governance: In order to deal with issues such as data de- and re-identification, data governance must be studied as its own field.
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Holmes, John H.
"Privacy, Security, and Patient Engagement: The Changing Health Data Governance Landscape,"
eGEMs (Generating Evidence & Methods to improve patient outcomes):
2, Article 9.
Available at: http://repository.edm-forum.org/egems/vol4/iss2/9