The goal of the 7th annual AMIA Health Policy Meeting, Health Data Use, Stewardship and Governance: Gaps and Challenges, is to further a national understanding of data use, re-use, stewardship and governance that meets challenges posed by technology-enabled sources of health data, and reflects current health informatics evidence and practices. In light of recent studies discussing the reliability of electronic health record (EHR) data as the basis for mandated reports and research, the meeting will develop and advance a data management model that recognizes healthcare data as an organizational, enterprise-wide asset and resource. The meeting will build on the prior work of AMIA, the Institute of Medicine (IOM) and others, especially in light of rapid changes being brought about by patient-centered medicine, performance and outcome measurement, and growing adoption of EHRs.
Specific Aims of the conference: 1) Articulate a framework for the re-use and governance of health data, recognizing that different stakeholders have different data needs and priorities. 2) Formulate policy recommendations, a research agenda and action steps directed to government, industry, academia, and other stakeholders that outline how health data use practices can best be supported by health IT and informatics. 3) Synthesize and disseminate meeting findings and recommendations via a report and other mechanisms to inform the policymaking process and move action and research agendas forward. The 2012 conference will build on the model developed during AMIA's previous six policy meetings: strong leadership by the PI and Meeting Chair, supported by an active Steering Committee and AMIA staff to conceptualize, plan and implement meeting activities;invitation of a multidisciplinary group of participants, reflecting a range of interested stakeholders;emphasis on small group discussion to achieve the aims;and widespread dissemination of meeting findings and recommendations. Relevance to AHRQ mission. There are clear synergies between AMIA's conference and AHRQ's mission to improve care safety and quality by developing successful partnerships and generating knowledge and tools needed for long-term improvement. AHRQ's interest in the use of health data to improve healthcare delivery and drive research is longstanding and is reflected in many of its key program areas and research portfolios: for example, the 2007 RFI to gauge stakeholder interest in a national data stewardship entity;commitment to improving the quality of data collected to address disparities among priority populations;and support of health IT secondary data analysis studies.

Public Health Relevance

The main goal of the 2012 AMIA Health Policy Meeting, Health Data Use, Stewardship and Governance: Gaps and Challenges, is to further a national understanding of data use, re- use, stewardship and governance that meets challenges posed by new and emerging technology-enabled sources of health data and reflects current health informatics evidence and practices. While healthcare data can be a rich resource for the creation of knowledge that furthers clinical and health services research, population research, public health monitoring, and disease prevention and control, appropriate stewardship of the data is key to maintaining trust and transparency across all data users. With the growing importance of patient-centered health care, it is critical that consumers understand how their data are being used and have confidence that their identity is protected.

National Institute of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Conference (R13)
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Health Care Technology and Decision Science (HTDS)
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Zayas-Caban, Teresa
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American Medical Informatics Assn
United States
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Wiley, Laura K; Tarczy-Hornoch, Peter; Denny, Joshua C et al. (2016) Harnessing next-generation informatics for personalizing medicine: a report from AMIA's 2014 Health Policy Invitational Meeting. J Am Med Inform Assoc 23:413-9
Brennan, Patti Flatley; Valdez, Rupa; Alexander, Greg et al. (2015) Patient-centered care, collaboration, communication, and coordination: a report from AMIA's 2013 Policy Meeting. J Am Med Inform Assoc 22:e2-6
Hripcsak, George; Bloomrosen, Meryl; FlatelyBrennan, Patti et al. (2014) Health data use, stewardship, and governance: ongoing gaps and challenges: a report from AMIA's 2012 Health Policy Meeting. J Am Med Inform Assoc 21:204-11