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Fostering Governance and Information Partnerships for Chronic Disease Surveillance: The Multi-State EHR-Based Network
Emily McCormick Kraus1, Lina Saintus, Amanda K Martinez
1The Task Force for Global Health, Public Health Informatics Institute, Decatur, Georgia (Dr Kraus, Ms Saintus, and Mr Brand); Kraushold Consulting, Denver, Colorado (Dr Kraus); National Association of Chronic Disease Directors, Decatur, Georgia (Ms Martinez and Dr Hohman); Division for Heart Disease and Stroke Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia (Ms Begley and Mr Merritt); AllianceChicago, Chicago, Illinois (Mr Hamilton); OneHealthPort, Seattle, Washington (Mr Rubin); Washington State Department of Health, Tumwater, Washington (Drs Sullivan and Karras); Center for Biomedical Informatics, Regenstrief Institute, Indianapolis, Indiana (Drs Grannis and Dixon); Indiana University School of Medicine, Indianapolis, Indiana (Dr Grannis); Health Data Compass, University of Colorado Anschutz, Aurora, Colorado (Dr Brooks and Ms Mui); Louisiana Public Health Institute, New Orleans, Louisiana (Dr Carton); Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, Massachusetts (Dr Klompas); and Indiana University Fairbanks School of Public Health, Indianapolis, Indiana (Dr Dixon).
Context:
Electronic health records (EHRs) are an emerging chronic disease surveillance data source and facilitating this data sharing is complex.
Program:
Using the experience of the Multi-State EHR-Based Network for Disease Surveillance (MENDS), this article describes implementation of a governance framework that aligns technical, statutory, and organizational requirements to facilitate EHR data sharing for chronic disease surveillance.
Implementation:
MENDS governance was cocreated with data contributors and health departments representing Texas, New Orleans, Louisiana, Chicago, Washington, and Indiana through engagement from 2020 to 2022. MENDS convened a governance body, executed data-sharing agreements, and developed a master governance document to codify policies and procedures.
Results:
The MENDS governance committee meets regularly to develop policies and procedures on data use and access, timeliness and quality, validation, representativeness, analytics, security, small cell suppression, software implementation and maintenance, and privacy. Resultant policies are codified in a master governance document.
Discussion:
The MENDS governance approach resulted in a transparent governance framework that cultivates trust across the network. MENDS's experience highlights the time and resources needed by EHR-based public health surveillance networks to establish effective governance.
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