Laying the Groundwork: Leveraging Local Health Networks to Modernize Public Health Data in Chicago
- By: Garlie St-Cyr, MPH
- Date
Despite recognizing data improvement as a potential strategy to address the increasing chronic disease burden in the United States, the public health sector has struggled to keep pace with advances and innovation in data. Challenges in coordination between public health agencies, healthcare systems, and other sectors have led to limitations in data’s ability to inform effective policies and interventions. However, recent national initiatives, such as the CDC’s Data Modernization Initiative, reflect an effort to enhance public health data systems and respond to emerging needs. While national initiatives like the CDC’s Data Modernization Initiative aim to enhance public health data systems at a broad level, data improvement at local and city levels is equally crucial for developing comprehensive strategies to address rising chronic disease prevalence and other community health challenges.
The goal of the CDPH initiative is to modernize data exchange by bridging health systems, public health, and the public to monitor the chronic disease burden, improve population health, and eliminate chronic disease inequities in Chicago.
The Chicago Department of Public Health (CDPH) is taking a proactive approach to chronic disease surveillance by utilizing data from both population health surveys, such as the Healthy Chicago Survey, and electronic health records (EHRs). The Healthy Chicago Survey (HCS), initiated by the Chicago Department of Public Health (CDPH) in 2014, is an annual survey designed to assess the health of Chicago residents. It collects data on various topics, including access to health services, chronic conditions, mental health, neighborhood conditions, and more. The survey helps identify community health concerns, understand social factors influencing health, and supports public health initiatives like Healthy Chicago 2025. However, while surveys such as these are valuable, they come with certain limitations. The data is often self-reported, lacks follow-up opportunities, and may not capture detailed chronic disease information.
To address these gaps, CDPH is also turning to EHR data, which offers more detailed, timely information and allows for longitudinal tracking of patient health, including less common chronic conditions. To further strengthen chronic disease surveillance and bridge gaps in data detail and timeliness, CDPH expanded its efforts in 2022 by collaborating with the Chicago Area Patient-Centered Outcomes Research Network (CAPRiCORN) and their Patient and Community Advocacy Committee (PCAC) for engagement and buy-in. CAPRiCORN, led by an investigator at Northwestern Medicine, comprises eleven healthcare and university-based organizations to create a regional collaborative focused on identifying population health gaps in Chicago.
Using EHRs, the network can submit de-identified data based on three types of queries requested by CDPH: validation, single, and project-specific queries. Validation query data received will be validated against health survey data and deliverables from the other queries can potentially identify population health needs. The queries were developed by conducting literature reviews and working with internal and external informatics teams. Looking forward, the CDPH will continue to refine and finalize query development with the CAPRiCORN sites and anticipate data from the first round of submitted queries soon. With localized data and health equity improvement as a central goal, CDPH plans to increase community engagement and implement informed programs such as community health worker-led hypertension outreach.
In her session, “Modernizing Chronic Disease Public Health Data through Linkages with Electronic Health Records: A Chicago Journey” at the 2024 Open Forum, Emily Hoover, a CSTE Applied Epidemiology fellow at CDPH, shared valuable insights and practical guidance for jurisdictions looking to implement similar data initiatives.
- She highlighted that health department offices and legal departments should be involved early to delineate which plans are legally feasible and initiate a contractual relationship with partners if needed. Hoover also stressed that program staff members understand public health surveillance, human subject research, and their differences before starting data initiatives. Developing plans and contracts can be a lengthy process and early involvement can prevent legal roadblocks and promote transparency among partners.
- Involve subject matter experts in chronic disease areas during query development to enhance the quality and relevance of data initiatives. Their specialized knowledge is especially valuable for health departments with limited resources, as they can assist in formulating precise queries, interpreting complex data, and ensuring that the results align with public health priorities. Additionally, experts can provide guidance on best practices, emerging trends, and potential pitfalls in chronic disease surveillance, enabling health departments to build more robust, informed data strategies.
- Hoover emphasized the importance of considering funding constraints when planning and implementing chronic disease surveillance initiatives. She pointed out that chronic disease surveillance often requires unique infrastructure and resources that may not be fully addressed by current data modernization efforts within their typical timelines. Hoover encouraged health departments to account for these limitations early on to ensure that resources are allocated effectively to meet both immediate and long-term program needs.
- Hoover highlighted the current lack of a standardized algorithm for disease queries, despite numerous EHR-based initiatives across the U.S. She emphasized that establishing standardized query sets would greatly facilitate the comparison of trends and estimates across health departments and organizations. According to Hoover, this standardization would not only enhance data consistency but also enable more effective collaboration and robust national analyses, ultimately improving chronic disease surveillance and public health outcomes. Finally, she reminded the audience that query development is an iterative process, demanding regular updates and refinements.
There are widespread initiatives to move the work of data modernization forward in public health. At the local level and for certain health indicators or conditions, information is typically less available. Antiquated surveillance systems can prevent actionable information from reaching decision-makers efficiently, with information often taking over a year or more to reach public health agencies. Though in its early phases, the chronic disease data surveillance program with the Chicago Department of Public Health and CAPRiCORN provides an example of how partnerships and the use of EHRs can be leveraged to improve data in public health.
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