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.

Leveraging Electronic Health Record Data for Timely Chronic Disease Surveillance: The Multi-State EHR-Based Network for Disease Surveillance.

CONTEXT: Electronic health record (EHR) data can potentially make chronic disease surveillance more timely, actionable, and sustainable. Although use of EHR data can address numerous limitations of traditional surveillance methods, timely surveillance data with broad population coverage require scalable systems. This report describes implementation, challenges, and lessons learned from the Multi-State EHR-Based Network for Disease Surveillance (MENDS) to help inform how others work with EHR data to develop distributed networks for surveillance. PROGRAM: Funded by the Centers for Disease Control and Prevention (CDC), MENDS is a data modernization demonstration project that aims to develop a timely national chronic disease sentinel surveillance system using EHR data. It facilitates partnerships between data contributors (health information exchanges, other data aggregators) and data users (state and local health departments). MENDS uses query and visualization software to track local emerging trends. The program also uses statistical and geospatial methods to generate prevalence estimates of chronic disease risk measures at the national and local levels. Resulting data products are designed to inform public health practice and improve the health of the population. IMPLEMENTATION: MENDS includes 5 partner sites that leverage EHR data from 91 health system and clinic partners and represents approximately 10 million patients across the United States. Key areas of implementation include governance, partnerships, technical infrastructure and support, chronic disease algorithms and validation, weighting and modeling, and workforce education for public health data users. DISCUSSION: MENDS presents a scalable distributed network model for implementing national chronic disease surveillance that leverages EHR data. Priorities as MENDS matures include producing prevalence estimates at various geographic and subpopulation levels, developing enhanced data sharing and interoperability capacity using international data standards, scaling the network to improve coverage nationally and among underrepresented geographic areas and subpopulations, and expanding surveillance of additional chronic disease measures and social determinants of health.

Equity and Accessibility of Washington State's COVID-19 Digital Exposure Notification Tool (WA Notify): Survey and Listening Sessions Among Community Leaders.

BACKGROUND: In November 2020, WA Notify, Washington State's COVID-19 digital exposure notification tool, was launched statewide to mitigate ongoing COVID-19 transmission. WA Notify uses the Bluetooth proximity-triggered, Google/Apple Exposure Notification Express framework to distribute notifications to users who have added or activated this tool on their smartphones. This smartphone-based tool relies on sufficient population-level activation to be effective; however, little is known about its adoption among communities disproportionately impacted by the COVID-19 pandemic or what barriers might limit its adoption and use among diverse populations. OBJECTIVE: We sought to (1) conduct a formative exploration of equity-related issues that may influence the access, adoption, and use of WA Notify, as perceived by community leaders of populations disproportionately impacted by the COVID-19 pandemic; and (2) generate recommendations for promoting the equitable access to and impact of this novel intervention for these communities. METHODS: We used a 2-step data collection process to gather the perspectives of community leaders across Washington regarding the launch and implementation of WA Notify in their communities. A web-based, brief, and informational survey measured the perceptions of the community-level familiarity and effectiveness of WA Notify at slowing the spread of COVID-19 and identified potential barriers and concerns to accessing and adopting WA Notify (n=17). Semistructured listening sessions were conducted to expand upon survey findings and explore the community-level awareness, barriers, facilitators, and concerns related to activating WA Notify in greater depth (n=13). RESULTS: Our findings overlap considerably with those from previous mobile health equity studies. Digital literacy, trust, information accessibility, and misinformation were highlighted as key determinants of the adoption and use of WA Notify. Although WA Notify does not track users or share data, community leaders expressed concerns about security, data sharing, and personal privacy, which were cited as outweighing the potential benefits to adoption. Both the survey and informational sessions indicated low community-level awareness of WA Notify. Community leaders recommended the following approaches to improve engagement: tailoring informational materials for low-literacy levels, providing technology navigation, describing more clearly that WA Notify can help the community, and using trusted messengers who are already engaged with the communities to communicate about WA Notify. CONCLUSIONS: As digital public health tools, such as WA Notify, emerge to address public health problems, understanding the key determinants of adoption and incorporating equity-focused recommendations into the development, implementation, and communication efforts around these tools will be instrumental to their adoption, use, and retention.

Roundtable on bioterrorism detection: information system-based surveillance.

During the 2001 AMIA Annual Symposium, the Anesthesia, Critical Care, and Emergency Medicine Working Group hosted the Roundtable on Bioterrorism Detection. Sixty-four people attended the roundtable discussion, during which several researchers discussed public health surveillance systems designed to enhance early detection of bioterrorism events. These systems make secondary use of existing clinical, laboratory, paramedical, and pharmacy data or facilitate electronic case reporting by clinicians. This paper combines case reports of six existing systems with discussion of some common techniques and approaches. The purpose of the roundtable discussion was to foster communication among researchers and promote progress by 1) sharing information about systems, including origins, current capabilities, stages of deployment, and architectures; 2) sharing lessons learned during the development and implementation of systems; and 3) exploring cooperation projects, including the sharing of software and data. A mailing list server for these ongoing efforts may be found at http://bt.cirg.washington.edu.

Development and evaluation of public health informatics at University of Washington.

Public Health Informatics (PHI) education began at the University of Washington (UW) with a Summer Institute in 1995. The Biomedical and Health Informatics graduate program, which is housed in the School of Medicine, is an interdisciplinary, multi-school program. It demonstrates the UW's cooperative efforts in advancing informatics, encompassing the schools of public health, medicine, nursing, dentistry, pharmacy, information and graduate schools in computer science. This article provides an overview of the developmental milestones related to activities in PHI and describes the evaluation strategy and assessment plan for PHI training at the UW (http://phig.washington.edu).