Fostering Governance and Information Partnerships for Chronic Disease Surveillance: The Multi-State EHR-Based Network for Disease Surveillance.

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.

A process to deduplicate individuals for regional chronic disease prevalence estimates using a distributed data network of electronic health records.

Introduction: Learning health systems can help estimate chronic disease prevalence through distributed data networks (DDNs). Concerns remain about bias introduced to DDN prevalence estimates when individuals seeking care across systems are counted multiple times. This paper describes a process to deduplicate individuals for DDN prevalence estimates. Methods: We operationalized a two-step deduplication process, leveraging health information exchange (HIE)-assigned network identifiers, within the Colorado Health Observation Regional Data Service (CHORDS) DDN. We generated prevalence estimates for type 1 and type 2 diabetes among pediatric patients (0-17 years) with at least one 2017 encounter in one of two geographically-proximate DDN partners. We assessed the extent of cross-system duplication and its effect on prevalence estimates. Results: We identified 218 437 unique pediatric patients seen across systems during 2017, including 7628 (3.5%) seen in both. We found no measurable difference in prevalence after deduplication. The number of cases we identified differed slightly by data reconciliation strategy. Concordance of linked patients' demographic attributes varied by attribute. Conclusions: We implemented an HIE-dependent, extensible process that deduplicates individuals for less biased prevalence estimates in a DDN. Our null pilot findings have limited generalizability. Overlap was small and likely insufficient to influence prevalence estimates. Other factors, including the number and size of partners, the matching algorithm, and the electronic phenotype may influence the degree of deduplication bias. Additional use cases may help improve understanding of duplication bias and reveal other principles and insights. This study informed how DDNs could support learning health systems' response to public health challenges and improve regional health.

Evaluating Population Coverage in a Regional Distributed Data Network: Implications for Electronic Health Record-Based Public Health Surveillance.

OBJECTIVE: Electronic health records (EHRs) hold promise as a public health surveillance tool, but questions remain about how EHR patients compare with populations in health and demographic surveys. We compared population characteristics from a regional distributed data network (DDN), which securely and confidentially aggregates EHR data from multiple health care organizations in the same geographic region, with population characteristics from health and demographic surveys. METHODS: Ten health care organizations participating in a Colorado DDN contributed data for coverage estimation. We aggregated demographic and geographic data from 2017 for patients aged ≥18 residing in 7 counties. We used a cross-sectional design to compare DDN population size, by county, with the following survey-estimated populations: the county population, estimated by the American Community Survey (ACS); residents seeking any health care, estimated by the Colorado Health Access Survey; and residents seeking routine (eg, primary) health care, estimated by the Behavioral Risk Factor Surveillance System. We also compared data on the DDN and survey populations by sex, age group, race/ethnicity, and poverty level to assess surveillance system representativeness. RESULTS: The DDN population included 609 840 people in 7 counties, corresponding to 25% coverage of the general adult population. Population coverage ranged from 15% to 35% across counties. Demographic distributions generated by DDN and surveys were similar for many groups. Overall, the DDN and surveys assessing care-seeking populations had a higher proportion of women and older adults than the ACS population. The DDN included higher proportions of Hispanic people and people living in high-poverty neighborhoods compared with the surveys. CONCLUSION: The DDN population is not a random sample of the regional adult population; it is influenced by health care use patterns and organizations participating in the DDN. Strengths and limitations of DDNs complement those of survey-based approaches. The regional DDN is a promising public health surveillance tool.

Geospatial Monitoring of Body Mass Index: Use of Electronic Health Record Data Across Health Care Systems.

OBJECTIVES: The Colorado BMI Monitoring System was developed to assess geographic (ie, census tract) patterns of obesity prevalence rates among children and adults in the Denver-metropolitan region. This project also sought to assess the feasibility of a surveillance system that integrates data across multiple health care and governmental organizations. MATERIALS AND METHODS: We extracted data on height and weight measures, obtained through routine clinical care, from electronic health records (EHRs) at multiple health care sites. We selected sites from 5 Denver health care systems and collected data from visits that occurred between January 1, 2013, and December 31, 2015. We produced shaded maps showing observed obesity prevalence rates by census tract for various geographic regions across the Denver-metropolitan region. RESULTS: We identified clearly distinguishable areas by higher rates of obesity among children than among adults, with several pockets of lower body mass index. Patterns for adults were similar to patterns for children: the highest obesity prevalence rates were concentrated around the central part of the metropolitan region. Obesity prevalence rates were moderately higher along the western and northern areas than in other parts of the study region. PRACTICE IMPLICATIONS: The Colorado BMI Monitoring System demonstrates the feasibility of combining EHRs across multiple systems for public health and research. Challenges include ensuring de-duplication across organizations and ensuring that geocoding is performed in a consistent way that does not pose a risk for patient privacy.