Data Modernization Initiative aims to meet lofty goals for public health
Federal agencies aim to improve health data sharing among state and federal agencies, but GAO questions progress and others contend the effort is underfunded.
The COVID-19 pandemic highlighted the importance of data sharing – as well as the frustrating consequences of unpreparedness when public health information is siloed and cannot be easily exchanged.
Information sharing woes were recognized early on in the pandemic as an impediment to successful management. For example, just months into the crisis, hospitals and public health agencies often had to rely on spreadsheets to exchange critical public health data. While some public-private initiatives sought to fill the gap, improvements in data sharing took months to achieve.
Given all the data sharing difficulties, the government’s ongoing Data Modernization Initiative, is critical. The Centers for Disease Control and Prevention launched DMI in 2020 to modernize the sharing of core data and surveillance information across federal and state public health agencies.
According information provided by the CDC, the DMI is aiming to “move from siloed and brittle public health data systems to connected, resilient, adaptable and sustainable ‘response-ready’ systems” that can get in front of future health crises. It intends to “deliver real-time, high-quality information on both infectious and non-infectious threats.”
Questions about progress
But the CDC is off to a slow start in achieving those lofty DMI goals, according to a report released in late April by the Government Accountability Office. The CDC has yet to establish action steps and deadlines for the DMI, the GAO said. And the watchdog agency also noted that the CDC has not yet allocated the $1.1 billion it received for the DMI.
The CDC, however, will scrutinize the DMI as part of an agencywide review of its inner workings ordered in early April by its director, Rochelle Walensky, MD.
Meanwhile some healthcare associations are pushing for more investment in the DMI effort, saying the lack of a data exchange infrastructure hampered the country’s response to the pandemic.
For example, the Healthcare Information and Management Systems Society is calling for an overall investment of at least $35 billion over 10 years to fully realize optimal exchange of public health information.
So far, the CDC has developed a basic structure for public health data sharing under the DMI. The structure calls for federal agencies to use a cloud-based approach, called the North Star Architecture. Progress on the DMI and the underlying architecture was described at the recent HIMSS22 conference in Orlando.
The Office of the National Coordinator for Health Information Technology is collaborating with the CDC on the data modernization project, said Micky Tripathi, the national coordinator for health IT at HIMSS22. The initiative ties into ONC’s pursuit of creating “an open architecture, an ecosystem based on open industry standards,” he said.
While health information exchange is now commonplace across the nation, Tripathi said, “public health barely participates in this. While there is interoperability already in the industry, public health’s ability to tap into those networks wasn’t achieved at scale” during the pandemic.
The recently released final Trusted Exchange Framework and Common Agreement will help facilitate information exchange nationwide. And it’s expected to support state government and public health agency efforts to bolster public health reporting by simplifying information exchange. TEFCA also is designed to facilitate bidirectional exchange with public health agencies, which posed a huge challenge during the COVID pandemic.
The North Star Architecture, which is being designed to support public health, will use a cloud-based service model governed by the CDC, as well as state, tribal, local and territorial (STLT) public health departments. The architecture will use a hosted infrastructure as well as shared tools, applications and data repositories, Tripathi said. The intent, he explained, is to provide the benefits of a common cloud platform while preserving state and local control of data and data use.
The CDC’s goal is to develop and sustain a modern, integrated and real-time public health and surveillance structure, said Dan Jernigan, MD, the agency’s deputy director for public health science and surveillance. “It was clear how unprepared we were (for COVID); before the pandemic, we had been developing systems that were siloed and couldn’t scale.”
State and federal health agencies have relied on multiple point-to-point submissions from providers, older technology and multiple different tools, Jernigan said. “Public health has just not been a part of the health ecosystem.”
The CDC and ONC are jointly supportingin Helios, an accelerator program from HL7 that seeks to use widely recognized data exchange standards to support information exchange in public health. The Helios accelerator program convenes government, private sector and philanthropic partners to create ways to use HL7’s Fast Healthcare Interoperability Resources, or FHIR, standard.
Call for more investment, urgency
However, many proponents of improvements to the public health data infrastructure want more attention paid to boosting information sharing.
For example, HIMSS is pushing for a commitment similar to that provided by the federal government in the HITECH Act, which offered substantial financial incentives to provider organizations for implementing electronic health records systems.
In an updated report released in late April, HIMSS estimated in a detailed report that an investment of $36.7 billion is necessary over the next 10 years to modernize and improve the interoperability of federal, state, local and tribal health systems.
HIMSS said federal agencies over the next three years should “build a foundation of interoperable platforms to facilitate broad-based data exchange.” Its report contended that agencies also need to bolster the workforce to support data exchange, analytics and coordination.
Of that estimated expenditure, nearly $25 billion should be spent over the first five years on getting state and local health organizations up to speed with technology. Indeed, the largest portion of that investment – some $22 billion – should be designated to support local essential services, such as syndromic disease surveillance, electronic case reporting, contact tracing, vital records reporting, electronic labs, IIS reporting and query, and disease surveillance.
With its initial funding of about $1 billion, the CDC is now focusing its data modernization efforts on the core systems that will improve its ability to improve case reporting and support the exchange of lab data, vital health records and immunization records, said Jennifer Layton, the CDC’s acting associate health director.
Other immediate efforts are aimed at improving data connections through standards, bulking up public health IT workforces and tackling change management initiatives that will break down long-standing information silos, Layton said.
The DMI effort will be time-consuming, said Jamie Pina, vice president of public health data modernization for the Association of State and Territorial Health Officials. “Data modernization will be a long-term effort, he said. “But this is our moment, our chance in history where we can have an impact and create some momentum that changes things.”
Technology to support data exchange “is in use in other sectors, but it has not been brought into the public health space,” Pina said. Building an infrastructure that broadly supports public health information, as called for under the North Star Architecture, is the best approach, he added.
Potential problems ahead
But confidence in federal initiatives, and in the CDC in particular, has been shaken in recent years, and it’s possible that states may opt out of any federal initiative, said Jeff DeFord, vice president and chief technical officer of Parkland Health and Hospital Services, a county hospital system based in Dallas.
The CDC has come under criticism for its response to the pandemic and lack of preparedness. In an email sent to CDC employees in April, Walensky noted the agency is undergoing a thorough evaluation of its structure, system and processes.
The goal of that soon-to-be-completed review is to pave the way for developing new systems and processes to facilitate the CDC’s role in public health. Changes will focus on data modernization as well as other components of the agency’s responsibilities, such as building laboratory capacity, health equity and rapid response capabilities.
But the plans for DMI already have been targeted for improvement by the GAO. In late April, the GAO lauded the CDC’s progress in modernizing public health data collection and the surveillance infrastructure, but it called on the agency to firm up its plans for the data modernization effort and set a timeline for those goals.
“CDC has not fully developed plans for how it will allocate certain funds for data modernization,” the GAO report added. “Without more specific, actionable plans, CDC may not be able to gauge its progress on the initiative or achieve key results in a timely manner. In addition, such lack of progress to implement enhanced surveillance systems could affect the quality and timeliness of data needed to respond to future public health emergencies.”
In a standard, perfunctory response to the GAO report, HHS noted that it agreed with the GAO’s findings.
The nation’s experience in dealing with the pandemic illustrates the importance of improving data sharing, DeFord of Parkland Health stressed.
“Let’s not lose sight of what’s at stake if we don’t get this right,” he said. “We realized we had some chinks in our armor (with COVID). All sorts of data was mischaracterized and rendered ineffective. At Parkland, we did the best we can do. But we know that having that information at scale can help us be more preventive the next time around.”