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COVID-19 emergency shows limitations of nationwide data sharing infrastructure

Several initiatives are working to gather patient data and map information on the spread of COVID-19, even as public health and federal efforts are bogged down in manual and paper-based processes.

The private initiatives are looking to incorporate ways to demonstrate the spread and extent of the pandemic in various geographic areas, hoping to enable health researchers to better understand how the virus is spreading, who it’s affecting and how to potentially prevent it from affecting more individuals.

These efforts are using data from a variety of sources, and some initiatives are aiming to eventually directly cull information from healthcare providers’ electronic health records.

However, public health and federal programs aiming to collect data on the pandemic are largely relying on manual efforts to gather and submit data, which is often incomplete and missing key demographic information that would enable adequate identification of surges in infection, or useful research or predictions. Electronically gathered information in EHRs is generally is not being used.

“In the current state of affairs with COVID data sharing, we see exposed the failures of our public health infrastructure,” said Aneesh Chopra, president of data service provider CareJourney and former chief technology officer for the U.S. in the Obama administration. Referencing the past decade’s federal incentive program to support providers’ implementations of EHRs, “We find ourselves with a $30 billion-plus investment in EHR records, and broader digitization across the health economy,” but federal health agencies aren’t getting enough data to do an effective job, he contended.

Mapping initiatives

A recently launched interactive website is enabling medical researchers to use maps to visualize the penetration of COVID-19 infections in California, as well how a variety of socioeconomic factors affect health at a population level.

The UCSF School of Medicine Dean’s Office of Population Health and Health Equity released UCSF Health Atlas earlier this year. Long planned to study the prevalence of a variety of diseases, the COVID-19 pandemic was the impetus for getting the visual mapping project released this spring, said Debby Oh, project lead of Health Atlas and an epidemiologist in the UCSF Department of Epidemiology and Biostatistics.

For COVID-19 data, the UCSF Health Atlas relies on information from the Los Angeles Times, whose reporters are gathering case data from more than 60 different health departments in the state on a daily basis. More broadly, the project reports data from publicly available sources such as the American Community Survey from the Census Bureau, the 500 Cities Project from the Centers for Disease Control and Prevention, and many others.

The intent of the program is to give researchers an easy-to-use tool to explore what factors can impact health on a population level, Oh said. Maps on the site enable researchers to see color-coded representations of COVID cases, deaths, both numerically and on a percentage of population basis.

The site also enables researchers to overlay more than 100 demographic or social factors, such as ethnic backgrounds, and determinants of health, such as food security, housing insecurity or other neighborhood-level factors. The curated data can provide visualizations down to the census tract level, an area roughly equivalent to a neighborhood as established by the Bureau of Census, for analyzing populations.

Predicting COVID-19’s course

A variety of other initiatives are attempting to use data to measure the extent of COVID-19 infection across the country and assist in providing either real-time or predictive information.

For one, a COVID-19 Outbreak Tracker is now being offered by Cotiviti, a solutions and analytics vendor, to find prospective hot spots for COVID-19 outbreaks. The predictive tool uses both clinical and claims data from Caspian Insights, Cotiviti’s longitudinal data and analytics ecosystem, to help forecast which geographic areas may be affected by COVID-19 in the immediate future.

An interactive map enables users to click on a state, then drill down from there to a view of data by county. Darker colors on the maps indicate more leading indicators of potentially hidden outbreaks, based on signature care profiles of COVID-19. Cotiviti contends that these areas that have not already seen a surge in confirmed cases are at greater risk of hidden outbreaks.

“Every hospital I know is calculating this by hand, manually entering it into spreadsheets and sharing them with the federal, state and regional health agencies. Copies of spreadsheets are flying hither and thither.”

Aneesh Chopra, CareJourney

By analyzing COVID-19 screening procedures across millions of medical claims processed daily by Cotiviti’s Caspian Insights platform and comparing those with historical trends, Cotiviti said its map “can identify future instances of an outbreak with a high degree of accuracy, helping the healthcare industry shift its response from reactive to proactive.”

Similarly, SADA Systems and HCA Healthcare, as well as other healthcare providers, are collaborating to build the National Response Portal for tracking disease hot spots. Running on Google Cloud, the map-based approach is intended to track disease outbreaks at both a state and county level.

Organizers said the initiative aims to combat the spread of COVID-19 via an open data platform, promoting data sharing about the pandemic and how it is spreading, with the goal of helping hospitals and communities prepare and respond.

The initiative seeks to help providers safely share and display anonymous, aggregated metrics on a single platform showing a real-time view of the COVID-19 pandemic. When it’s live, data will be submitted each day from hospital systems, focusing on metrics such as ICU bed supply and utilization; ventilator supply and utilization; total numbers of positive, negative and pending COVID-19 test results; and total numbers of healthy patients who have been discharged. The platform also will leverage publicly available datasets.

In another effort to aid COVID researchers, Change Healthcare last week announced Market Insights: COVID-19 Analytic Data Sets, an online research environment for qualified public and private organizations. The healthcare technology vendor said the environment combines data science tools with timely, de-identified claims data, which it says, “provide a more comprehensive view beyond the test or diagnosis, including other diagnoses, past care and social determinants of health.”

More information, including subscription information, can be found here.

SalesForce is also getting into the act, partnering with Rhode Island’s Department of Health and the National Guard on using a database for contact tracing purposes, and news reports suggest that the company has developed an app for tracking virus exposure. Other states and large cities are eyeing the approach.

However, the use of apps to enable contact tracing may not be a panacea, suggests an article this weekend in the Economist. They’re untested, and inaccurate information can “mislead health officials and citizens in ways that can be as harmful as any failed drug.” Apps are not always widely used, especially among the elderly, who are most at risk for COVID-19. Accuracy, lack of granularity and privacy concerns also might scuttle this technological approach.

Automating data aggregation

Some initiatives are seeking to automate efforts to pull together important data on the COVID crisis and make it available to organizations and agencies in charge of response.

The Nebraska Health Information Exchange has created a statewide COVID-19 dashboard that provides current information on testing, hospital bed availability and medical supply resources to help fight the spread of the disease. An integral component of NEHII’s COVID-19 dashboard is comprehensive laboratory information that reduces gaps in public health data and analytics to monitor the COVID-19 outbreak and response.

NEHII is able to aggregate COVID-19 data through direct data feeds from hospitals, clinics and laboratories throughout Nebraska and regional labs– even from those outside its HIE network. In addition, NEHII can gather and access all lab results from private laboratories – in addition to the state laboratory – where tests may be sent because of capacity or overflow. The goal is to enable providers to see the results of a COVID-19 test from wherever the results are processed. As a result, if a COVID-19-positive patient ends up in an emergency department, a provider will be able to see the results of all screenings.

NEHII uses NextGate’s Enterprise Master Patient Index, which provides the interoperability and patient matching for real-time data on laboratory testing, and the initiative employs KPI Ninja for their analytics and InterSystems for their ADT alerts.

Other initiatives aim to enable broader, easier data sharing. One that’s on the horizon involves the use of HL7’s Fast Healthcare Interoperability Resources to enable the automated identification of reportable health events in EHRs and facilitate their transmission to state and local public health authorities.

Called Electronic Case Reporting, the intent is to have the app, called eCR Now, to be integrated into electronic health records systems, to enable their products to automatically gather and forward data on COVID-19 patients. It identifies patients through “trigger codes,” then automates reporting to agencies.

A group within the FHIR community is working on developing the use case, said John W. Loonsk MD, consulting chief medical informatics officer for the Association of Public Health Laboratories, and adjunct associate professor at the Johns Hopkins Bloomberg School of Public Health. In an update at HL7’s FHIR Connectathon last week, Loonsk said the app is being refined quickly, with a third iteration expected to be ready by the end of the month.

The work “is progressing rapidly, and the promise for health systems is to do the legally required reporting that is now paper-based and manual,” he added. In April, the Centers for Disease Control introduced an early version of eCR Now to facilitate data reporting on COVID-19. The app would enable the reporting of anonymized data to the CDC, Loonsk said.

Another initiative that kicked off in April aims to use EHR systems as the information source to build an open COVID-19 patient data registry.

The Robert Wood Johnson Foundation’s Health Data for Action program, managed by AcademyHealth, is supporting a collaboration between Health Care Cost Institute, CareJourney and a network of health systems to increase the availability of standardized, actionable information on the impact and progression COVID-19.

Participating healthcare systems include Geisinger, HealthShare Exchange/Jefferson Health; the Oregon Community Health Information Network (OCHIN); Prisma Health; and Rush University Medical Center, with more expected to join the effort.

The registry network will include a series of standardized data extracts and queries that will enable researchers, clinicians, policy makers and journalists to better understand the impact and progression of COVID-19. Participants will develop a list of standardized research questions, which will be answered via a distributed query process. Where possible, participants will share best practices, tools and additional technical resources, including efforts that build on recent federal regulations such as use of “bulk” FHIR that can scale.

Federal reporting challenges

But even as initiatives increasingly seek to share healthcare data and information related to treating the crisis, there is no slick way to get information from providers’ electronic health records systems into the hands of federal agencies tasked with compiling that information.

CareJourney’s Chopra said COVID-19 reported to the CDC tends to be collected via manual means and lacks meaningful demographic context.

“Of all publicly reported cases (received by the CDC), 90 percent lacked any clinical context for the investigators to understand,” Chopra contended. “We basically are getting phoned in and faxed in results, with maybe an electronic feed on lab results, but with basic demographics in some cases, often without age or race or any other variable.” CDC confirms that more than half of reports come back without racial or ethnic data.

Timely, electronic reporting of COVID-19 data is crucial if the nation is to pursue a variety of initiatives that hold the brightest promise of scaling back the spread of the virus, he contends.

“We want to make sure that we understand the current clinical composition of all COVID patients in the country; we want to make sure we have as timely as possible public health reporting,” he said. By doing so, “We can more rapidly identify patients for contact tracing and self-quarantining, so we can put out campfires instead of the more aggressive forest fires we’re facing now.”

Chopra sees at least two issues hampering the use of EHRs for reporting data to public health agencies.

First, the common clinical datasets now in use “are insufficient to meet the data requirements for COVID investigations. Imagine the ability for every EHR to have mapped their source systems into the data model that public health needs to understand the dynamics and epidemiology of COVID; we need to iterate on the mappings in EHRs.”

Second, there are disconnects that stand in the way of the level of data sharing required. “It takes two to tango – you need an application (in a public health agency) that’s the recipient of the data, and you need a provider capable of sending it,” Chopra said. HIEs may not be in a position, technically or legally, to provide the information to the agencies that need it, he contended.

As a result, providers are facing a data reporting burden in submitting information to federal agencies. Those challenges also were reported on recently by Politico, which found that medical researchers are relying on faxes and paper records – that’s because even though providers have benefitted from a blitz of digitization, public health agencies have been left behind.

“The nation’s public health tech system, from the CDC down to local agencies, are relying on technology from the turn of the 21st century that’s slowing efforts to track infected people, gauge how fast the virus is spreading and coordinate resources,” Politico reports.

“Our ability to do the detection work we need to do is hampered,” the news organization quotes Raquel Bono, the coordinator of Washington state’s coronavirus response. “We don’t have a single data repository for tracing per se,” she said, adding that record-keeping and reporting is “primarily manual.”

Chopra said the CDC is banking on automation to improve the data flow, but that will take time. For now, providing data for even the simplest questions is a manual headache.

“Every hospital is obligated to report daily their resources tied to COVID – how many patients are in ICU beds or on ventilators, for example. That’s a big manual burden; every hospital I know is calculating this by hand, manually entering it into spreadsheets and sharing them with the federal, state and regional health agencies,” he said. “Copies of spreadsheets are flying hither and thither. Thankfully, CDC is stepping up now,” but he warned that current initiatives are still early in testing phases.

Fred Bazzoli is a contributing writer to Healthcare IT News.
Twitter: @fbazzoli
Healthcare IT News is a HIMSS Media publication.

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  • Posted on June 2, 2020