Electronic health record surveillance systems: A new approach to chronic disease surveillance

Background: Chronic diseases are leading causes of morbidity and mortality worldwide. Traditional methods of chronic disease surveillance are often costly, implemented infrequently, and are rarely designed to provide local data. New surveillance systems based on data from office-based electronic health records (EHRs) have the potential to significantly increase knowledge of the prevalence and management of chronic conditions at the community level, and are becoming more feasible as EHR use becomes widespread. We seek to contribute to the field of electronic health record surveillance system (EHRSS) development by describing the challenges and design decisions encountered during the development of the NYC Macroscope EHRSS. Methods: We reviewed the gray and published literature in this rapidly developing field; spoke with key informants from government, industry, and academia; and developed the indicators, procedures, analytic methods and evaluation criteria for the New York City Macroscope EHRSS. In July 2013 we published a 26-page report documenting lessons learned from these planning activities. Results: EHRSS development requires coordinated leadership and alignment of goals, attention to confidentiality, and technological readiness. Methodological considerations include: system design and interoperability among EHR systems; data quality and standardization of data elements; record selection and indicator definitions; and, data reliability, validity, and generalizability. Discussion: EHRSSs have the potential to provide community level data on chronic disease prevalence and management, but EHRSS development is in its infancy. Our findings contribute to the EHRSS knowledge base and can be used to inform the development of EHRSSs in other jurisdictions.