Statewide Surveillance via Health Data Utility: A Case Study in California

By Alan Katz, Associate Director of Advocacy & Public Policy, Civitas Networks for Health  

ABSTRACT— During the COVID-19 pandemic, the California Department of Public Health (CDPH) developed a disease-specific network for laboratory test reporting in real time to operate alongside established clinical registries. The benefits of the new reporting system were evident—as was the need to expand and refine its capabilities for a new paradigm of post-pandemic health data functionality. The resulting Surveillance and Public Health Information Reporting and Exchange (SaPHIRE) is a public-private resource that integrates multiple clinical data streams from over 400 laboratory providers across the state in collaboration with California’s largest nonprofit health information exchange, fulfilling core aims of the Centers for Disease Control and Prevention’s Public Health Data Strategy (PHDS) while reinforcing a significant use case for the emerging health data utility (HDU) model.

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On March 4, 2020, Gavin Newsom, the Governor of California, proclaimed a state of emergency in response to the COVID-19 pandemic, which was followed by a federal Stafford Act emergency declaration for COVID-19 on March 22. As occurred elsewhere, the next weeks and months were characterized by a scramble across the state health system to marshal and deploy the resources necessary to diagnose and treat patients who had contracted the virus, while working to slow its spread. The inadequacy of CDPH’s existing system—the California Reportable Disease Information Exchange (CalREDIE)—for processing the massive increase in electronic lab reporting (ELR) volume from public and private lab facilities was recognized as a critical vulnerability during this period.[1] After a few early technical missteps, a new California COVID-19 reporting system (CCRS) “went live” in October 2020 before achieving full functionality in February 2021.[2]

At the same time, the acute phase of COVID-19 was accelerating a transformation in the basic structure and function of health information networks. The decade prior to the pandemic saw the largest investments in digital health infrastructure in American history, courtesy of the federal Health Information Technology for Economic and Clinical Health Act (HITECH Act) of 2009.  HITECH distributed billions of dollars annually in EHR adoption incentive payments for providers, and billions more in enhanced reimbursement and grants for public and nonprofit health information exchange (HIE) organizations in every state.[3] In California, statewide and regional HIE entities were limited before HITECH; by the time the last HITECH funding sunsetted and the state’s Data Exchange Framework (DxF) law was enacted in 2021, the six major HIEs designated by the state as DxF Qualified Health Information Organizations (QHIOs) were connected to nearly as many healthcare providers as CDPH itself, and working across multiple use cases apart from traditional point-to-point transmission of clinical data.

Central to this evolution is the increasing connectivity between the HIEs and public health agencies (PHAs) on the state and local level (including nearly 70% of California county health departments) and an array of community-based organizations (CBOs) addressing health-related social needs (HRSNs), creating integrated treatment and referral networks with common data elements under shared and collaborative governance.[4] The pandemic was an unprecedented test for these networks and an opportunity to demonstrate their reach, technical capabilities, and capacity for rapid innovation in the face of complex challenges. Among the activities enabled by HIE-led networks were the assimilation of COVID-19 contact tracing, labs, and treatment (and later vaccine status) data into millions of longitudinal patient records[5], while simultaneously feeding real-time information on provider resource allocation (inpatient bed capacity, staffing levels) to PHAs and hospitals[6]; building data dashboards to help track and predict cases at the community level; and helping clinicians manage post-COVID follow up for the most vulnerable patients via chronic care referrals and CBO service availability.[7] The tools, procedures, and (especially) institutional partnerships that emerged to meet these needs gave further credence to the model of health data organizations as nonprofit standalone entities broadly accountable to the public interest—emerging health data utilities (HDUs) at the center of public health[8] with implications for federal health information efforts.

In the year after CCRS launched, CDPH continued to maintain and expand it as the state’s repository for COVID-19 ELR, while CalREDIE remained the primary system for ELR and electronic case reporting (eCR) surveillance of more than 85 other diseases and conditions that providers report to their local public health departments.[9] Driven by the ongoing necessity of coronavirus coverage through waves of infection, diagnostic innovation, and the corresponding attention and resources, CCRS’ capabilities as a tool for the transmission and management of data at scale began to outstrip those of CalREDIE. By spring 2022, CDPH was seeking a way to better integrate the two systems and broaden CCRS’ digital jurisdiction to include other data streams and standards, which would leverage collaboration with a wider range of private and nonprofit stakeholders in the information ecosystem and improve the state surveillance enterprise as a whole. After a competitive bidding process, the three-year contract for this upgraded, more comprehensive network—called the Surveillance and Public Health Reporting and Exchange (SaPHIRE)—was awarded to Manifest MedEx (MX), the largest of California’s QHIOs by geography and population served, and one of its emerging HDUs.[10]

The structure of SaPHIRE, in which the system is designed, operated and managed by MX based on requirements from CDPH, represents another step forward in the transition from legacy HIEs to multi-functional HDUs in California (and given its sheer size, a notable case study nationally). Using the lessons learned from the first year of CCRS operations, CDPH’s objective was to extend the functionality of that system to ELR exchange and related applications for disease categories beyond COVID-19, and thus effectively merge elements of CCRS and CalREDIE while maintaining the latter as a standalone baseline service. SaPHIRE fulfills that goal as the “front door” for laboratories statewide to submit reports directly to CalREDIE, but much of its work is on the back-end of connectivity: aggregating, deduplicating, and standardizing data from multiple domains, streamlining intake from nearly 400 public and private labs across the state,[11] and populating dashboards for CDPH analysts and other public health stakeholders to dissect data in near real time. Among the greatest strengths of SaPHIRE is its modularity—its ability to add new applications with precision and relative speed—made possible by MX infrastructure.

As MX and CDPH continue to develop SaPHIRE’s capabilities, its success has also served in large measure as a proof-of-concept demonstration for their federal partners. The Assistant Secretary for Technology Policy/Office of the National Coordinator for Health Information Technology (ASTP/ONC) has highlighted the robust connections that HIEs nationwide have built with hospital labs in particular (89% of which provide test results to their service area HIEs)[12]as a model for improving commercial and public health lab interoperability, which the agency considers a priority in the context of its new information blocking regulations. At the same time, Centers for Disease Control and Prevention is pursuing a 2024-2025 Public Health Data Strategy (PHDS) which has elevated ELR as “the core of public health data” alongside eCR and direct data links between healthcare facilities and labs termed “electronic test orders and results” (ETOR).[13] The PHDS has accordingly set national goals of having 100% of the non-federal labs funded by the CDC’s Epidemiology and Laboratory Capacity (ELC) Program connected to state-based intermediaries for data exchange by the end of this year; 100% of those labs conducting ETOR transactions by the same deadline; 100% of them capable of receiving CDC infectious disease data from federal labs by the end of next year; and 65% receiving eCR reports for at least 75% of their state-reportable conditions by the end of next year. Thanks to SaPHIRE, California’s labs in question can claim all these benchmarks already—and do so as part of a comprehensive and technically consolidated HDU infrastructure that sets the standard for future progress.

References:

[1] “California undercounting COVID-19 cases due to ‘serious’ technical issues, counties say.” The Sacramento Bee. 4 August 2020. Available: https://www.sacbee.com/news/coronavirus/article244717192.html

[2] “Following test-results dust-up, California to unveil a new COIVD-19 reporting system in October.” The Los Angeles Times. 1 September 2020. Available:  https://www.latimes.com/california/story/2020-09-01/california-new-covid-19-reporting-system-test-results

[3] Electronic Health Information Exchange. United States Government Accountability Office. April 2023. Available: https://www.gao.gov/assets/820/819458.pdf

[4] “HIE in California.” California Association of Health Information Exchanges. Available: https://cahie.org/initiatives/hie-in-ca/

[5] “LANES provides critical data sharing during COVID-19 public health crisis.” 24 April 2020. Available: https://lanesla.org/lanes-provides-critical-data-sharing-during-covid-19-public-health-crisis/

[6] “Adventist Sings Onto California HIE to Boost Patient Data Exchange.” TechTarget. 25 January 2021. Available: https://www.techtarget.com/searchhealthit/news/366579343/Adventist-Signs-Onto-California-HIE-to-Boost-Patient-Data-Exchange

[7] “Health Information Exchange in California: Assessment of Regional Market Activity.”  California Health Care Foundation. August 2021. Available: https://www.chcf.org/wp-content/uploads/2021/02/HIECAAssessmentRegionalMarketActivity.pdf

[8] “Health Data Utility: From Vision to Reality in Many States.” Healthcare Innovation. 11 July 2023. Available: https://www.hcinnovationgroup.com/interoperability-hie/article/53063442/health-data-utility-from-vision-to-reality-in-many-states

[9] “Reportable Diseases and Conditions.” Division of Communicable Disease Control, California Department of Public Health. Available: https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/Reportable-Disease-and-Conditions.aspx

[10] “Five of the Nation’s Leading Health Data Organizations Launch Health Data Utility Maturity Model.” Manifest Medex. Available: https://www.manifestmedex.org/five-of-the-nations-leading-health-data-organizations-launch-health-data-utility-maturity-model/

[11] “Manifest MedEx awarded contract with the California Department of Public Health to implement new data system for the surveillance and public health information reporting and exchange (SaPHIRE).” Businesswire. 16 August 2022. https://www.businesswire.com/news/home/20220816005264/en/Manifest-MedEx-Awarded-Contract-with-the-California-Department-of-Public-Health-To-Implement-New-Data-System-for-the-Surveillance-and-Public-Health-Information-Reporting-and-Exchange-SaPHIRE

[12] ”Laboratory Interoperability for Health Information Exchange Organizations.” ASTP Data Brief No. 74. September 2024. Available: Laboratory Interoperability Through Health Information Exchange Organizations | HealthIT.gov

[13] “Public Health Data Strategy Milestones for 2024 and 2025.” Centers for Disease Control and Prevention. Available: https://www.cdc.gov/public-health-data-strategy/php/about/milestones-for-2024-and-2025.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fophdst%2Fpublic-health-data-strategy%2Fphds-milestones.html

by kmatheson

Transforming an HIE to an HDU to Support Public Health Data Modernization

The transition from Health Information Exchanges (HIEs) to Health Data Utilities (HDUs) represents a critical evolution in public health data infrastructure. During her recent presentation at the American Public Health Association (APHA) Annual Meeting, Angie Bass, EVP & Chief Strategy Officer at Civitas member organization, Velatura Health Information Exchange Corporation, outlined the transformative potential of HDUs in enhancing public health through data integration and governance.

Before delving into the details of the presentation, it is important to level set on the types of organizations that can support public health infrastructure.

What Are Health Information Exchanges (HIEs)?

HIEs are organizations that facilitate the secure sharing of health data between different healthcare providers, payers, and public health agencies. Their primary goal is to ensure that the right information is available at the right time to support better clinical decision-making and improve patient outcomes across a region or state.

HIEs serve as a bridge between various health systems, allowing electronic health records (EHRs), lab results, imaging, and other vital health data to be accessed and exchanged seamlessly. By providing a centralized hub for health data, HIEs help reduce duplication of services, improve care coordination, and enhance the overall efficiency of healthcare delivery.

A Few Key Functions of HIEs:

• Data Integration: Aggregating data from diverse sources to create a comprehensive view of a patient’s health.
• Real-Time Data Sharing: Ensuring that healthcare providers have timely access to critical information.
• Care Coordination: Having access to real-time data supports better collaboration among care teams, especially for patients with complex medical needs.
• Public Health Reporting: Supporting disease surveillance, immunization tracking, and other public health initiatives by providing data to government health agencies.

While HIEs have made significant strides in improving healthcare interoperability, they may operate within limited scopes, primarily focusing on clinical data exchange. As the demand for additional data exchange use cases expands, there is an opportunity to build on HIE infrastructure. This is where the concept of HDUs comes in, building on the foundation of HIEs to deliver even broader benefits for public health and social care systems by offering more robust data sets and value-added services.

What Are Health Data Utilities (HDUs)?

HDUs aggregate, standardize, and govern data from diverse sources, including clinical providers, public health agencies, and social service organizations. This comprehensive approach allows HDUs to support secondary use cases such as population health initiatives, enabling real-time data sharing and advanced analytics that can produce critical insights.

One of the key benefits of HDUs is their ability to integrate, combine, and enhance health data. One use case being social determinants of health (SDOH) data; HDUs offer a holistic view of whole person health by weaving clinical, SDOH, behavioral health, and demographic data. Combining clinical health information with housing, education, and income data HDUs empower public health agencies, CBOs, Community Care Hubs, and other health improvement collaboratives to design targeted interventions that address the root causes of health inequities.

How Do HIEs and HDUs Differ?

While HIEs and HDUs share the common goal of facilitating data sharing to improve health outcomes, they differ in scope and functionality. HIEs primarily focus on exchanging clinical data between healthcare providers to enhance care coordination and decision-making for individual patients. In contrast, HDUs take a broader approach by aggregating, standardizing, and governing data from multiple sectors, including public health, social services, and community organizations.

This expanded role allows HDUs to address population health needs, integrate SDOH, and support public health initiatives. Despite these differences, HIEs often serve as foundational components of HDUs, providing critical infrastructure and expertise in health data interoperability. Together, they create a comprehensive data ecosystem that supports both individual and community health.

For other distinctions on HIEs and HDUs read through the HDU Framework.

Now that we have covered these fundamental basics, let us dig further into the HDU APHA presentation.

How Statewide HIEs Create Efficiency

Statewide HIEs streamline healthcare operations by eliminating duplication of effort, reducing waste, and lowering costs. Before statewide HIE implementation, providers and systems often had to build individual connections, leading to inefficiencies and higher expenses. Now, with a “connect once” model, organizations can access a shared network of services and data through a single connection, fostering seamless communication, improving care coordination, and optimizing resource use across the entire state.

Moving Beyond Traditional HIEs?

Traditional HIEs have long facilitated the exchange of clinical data, improving care coordination among providers for individual patients. However, they may face challenges, such as the ability to link fragmented data systems, to navigate inconsistent governance policies, and may have limitations in addressing broader public health issues such as providing eCase reporting, immunization records, and insights into health disparities and SDOH. These gaps underscore the need for a more comprehensive model to meet the demands of the evolving health data landscape—one that HDUs are designed to fill. To understand stakeholder’s readiness within a geography in becoming an HDU it is important to assess the current state and to consider the key characteristics of HDUs. There are necessary factors to make the transition and adopt an HDU model.

How HDUs Enhance Public Health

HDUs are transforming the public health landscape by creating a unified infrastructure for data collection, integration, and analysis. By leveraging data from a wide range of sources, HDUs empower public health agencies, healthcare providers, and community organizations to make more informed, data-driven decisions that improve health outcomes and equity.

Here’s how HDUs enhance public health:

• Strengthening Collaboration with Public Health Agencies: HDUs are designed to foster seamless collaboration between public health agencies (PHAs), healthcare providers, and community organizations. Through shared access to integrated and standardized data, PHAs can respond more effectively to challenges such as disease outbreaks, chronic conditions, and social crises. For instance, during a public health emergency like a pandemic, HDUs provide real-time insights on infection rates, healthcare system capacity, and resource availability. This infrastructure enables coordinated, data-driven decision-making, enhancing the ability to protect and promote population health at both local and national levels.
• Enabling Comprehensive Data Integration, Including SDOH: HDUs go beyond traditional clinical data by integrating a broader spectrum of information, including SDOH. SDOH data encompasses factors like income, education, housing, and access to transportation—key influencers of health outcomes and disparities. By combining clinical and social data, HDUs offer a more complete picture of individual and community health. This comprehensive view empowers public health agencies to design interventions that address not only medical needs but also the social and environmental factors impacting well-being, improving health equity.
• Strengthening Collaboration with Public Health Agencies: HDUs are designed to foster seamless collaboration between public health agencies, healthcare providers, and community organizations. Through shared access to integrated and standardized data, public health agencies can respond more effectively to challenges such as disease outbreaks, chronic conditions, and social crises. For instance, during a public health emergency like a pandemic, HDUs provide real-time insights on infection rates, healthcare system capacity, and resource availability. This infrastructure enables coordinated, data-driven decision-making, enhancing the ability to protect and promote population health at both local and national levels.
• Driving Data-Informed Strategies to Address Health Disparities: A core strength of HDUs is their ability to support data-driven approaches to reducing health disparities. By integrating diverse datasets across sectors such as healthcare, housing, and education, HDUs help identify vulnerable populations and uncover the root causes of inequities. Policymakers and public health professionals can use this data to target interventions where they are needed most—for example, connecting communities facing food insecurity with nutritional assistance programs or addressing housing instability through support services. By bridging the gap between health care and social care, HDUs play a critical role in driving more equitable health outcomes across populations.

Policy, Legislation, and Data Governance as Cornerstones for Nationwide HDU Infrastructure

The transition from HIEs to HDUs is gaining momentum, with policy and legislative efforts playing a critical role in shaping this transformation. On the federal front, the inclusion of HDU language in both House and Senate Labor-H appropriations bills represents a significant step forward. This legislative recognition not only defines HDUs but also establishes them as essential infrastructure for public health data management. Federal acknowledgment paves the way for increased funding opportunities and aligns HDU initiatives with national public health priorities set by agencies like the CDC and CMS. Such recognition will drive multi-state collaboration and position HDUs as a cornerstone of the nation’s health data strategy.

Securing Sustainable Funding

Robust and diversified funding mechanisms are essential for HDUs to thrive. States can leverage Medicaid funding to support HDU operations. While federal agencies may provide grants through existing public health data programs, it is important for HDUs to establish sustainable finance models. Beyond government funding, public-private partnerships offer an innovative approach to sharing costs and driving technological advancements. These partnerships and subscription-based models or value-based healthcare collaborations can ensure long-term financial sustainability, supporting the continuous improvement of HDU infrastructure, technology, and operations.

Establishing Strong Inclusive Data Governance

Data governance is a foundational element for the success of HDUs. As HDUs integrate more complex datasets—including clinical, social, and population health data—clear governance structures are essential to ensure data integrity, security, and ethical use. Key elements of data governance in the HDU framework include:

• Standardized Data Collection Protocols: Ensuring consistency and accuracy across diverse sources.
• Data Ownership and Access Rules: Defining who controls, manages, and can access sensitive health information.
• Regulatory Compliance: Adhering to HIPAA, state privacy laws, and other federal data protection regulations.
• Data Stewardship: Assigning trusted entities to manage and oversee the data lifecycle.

Without these governance policies, the potential for fragmentation and inefficiency increases, undermining the HDU’s ability to effectively serve public health needs. Strong governance not only safeguards data but also builds trust among stakeholders, enabling HDUs to operate as reliable and efficient public health data utilities.

Three Ways to Advocate for HDU Nationwide

As HDUs gain traction nationwide, the combined efforts of federal legislation, sustainable funding models, and robust data governance will be critical to realizing their full potential. By addressing these key factors, the HDU model can transform public health infrastructure, driving improved health outcomes and equity for communities across the country.

Here are three ways to advocate for HDU infrastructure:

1. Policy Advocacy: Support the adoption of HDUs by advocating for state and federal policies incorporating HDU frameworks. Highlight their inclusion in legislative efforts, such as the Federal Labor H bills, and emphasize the long-term public health benefits of investing in HDU infrastructure.
2. Securing Funding: Advocate for diverse and sustainable funding sources, including federal grants, state appropriations, and private sector partnerships. Highlight successful models like Velatura’s $50M recurring appropriation in Missouri to showcase the importance of long-term financial investment for HDU development and maintenance.
3. Building Collaboration: Foster partnerships among public health agencies, healthcare providers, payers, and community organizations to drive HDU success. Emphasize aligning goals and building trust while engaging technology vendors to ensure seamless data integration and governance. Collaboration at every level—local, state, and federal—will strengthen and expand HDU networks.

To learn more about HDU infrastructure and support mechanisms, please contact the Civitas team at contact [at] civitasforhealth.org.

by kmatheson