The COVID-19 pandemic has exposed serious flaws in how health data is collected and shared within states across the nation. The federal government relies on this patchwork of state systems to decide how to deploy resources to address the health needs of the populations it serves.

Nationally, investment in health data infrastructure has been woefully lacking for years, with significant consequences for public health reporting. California experienced that in February when officials decided to publish a vaccination dashboard to track the administration of COVID-19 vaccines just as large-scale inoculation efforts were getting underway in earnest. Due to the limitations of the aging data systems, the state dashboard was unable to provide an accurate accounting of how many Californians had been vaccinated.

Aimee Sisson, Yolo County public health officer, told state lawmakers during a February hearing that the state’s database undercounted the vaccines administered in Yolo by nearly 30%. Sisson wasn’t alone in her critique, reporter Melody Gutierrez noted in the Los Angeles Times. The Urban Counties of California, a legislative advocacy organization, wrote in a September letter to Governor Newsom that its member counties were “significantly challenged by the lack of accurate data at the state level.”

Designing a Better System

California is acting to remedy some of these knowledge gaps by including in the approved 2021–22 state budget new funding and requirements around data exchange. The budget directs the California Health and Human Services Agency to create a framework for data exchange with the help of an advisory group. The stakeholder group, which includes representatives from public health entities, health care providers, insurance companies, and patient advocacy groups, is tasked with creating a framework for advancing a system of health information exchange.*

It also specifies that the framework must be created by July 1, 2022, and requires organizations and facilities including health plans, physician practices, hospitals, and skilled nursing facilities to begin sharing data by January 31, 2024.

COVID Exceeded Limits of Outdated Systems

As COVID-19 surged throughout the US last fall and winter, information from states to the US Centers for Disease Control and Prevention (CDC) slowed to a trickle. A six-month investigation by Politico, published in August, found that the “state agencies that [the CDC] relied on were way behind in their tracking, with numbers trickling in from labs by fax or even snail mail.”

Reporter Erin Banco described the scene in Oklahoma: “Inside the state health department in Oklahoma City, staffers shuffled through piles of paper they’d pulled out of fax machines and sorted through hundreds of secure emails to upload COVID-19 lab results manually to the state’s digital dashboard — a system that often malfunctioned. Other employees desperately tried to work with labs — many of [which] had not worked with the state previously — to walk them through the process of sending results electronically.”

“Oklahoma’s struggle is America’s,” Banco wrote. “The coronavirus exposed a patchwork system in which state officials struggled to control the spread of Covid-19 because their outdated surveillance systems did not allow them to collect and analyze data in real-time.”

The CDC relies on states’ systems to supply public health data, yet according to a September report, half of privately owned US hospitals could not share data (PDF) with public health agencies.

Robinson Meyer and Alexis C. Madrigal, who founded the COVID Tracking Project when they were staff reporters for The Atlantic, were stunned to discover these gaps in the nation’s health data infrastructure.

“We assumed that the government had these data, and we hoped a small amount of reporting might prod it into publishing them,” they wrote in March. Instead, they saw that the White House had reproduced one of their charts. “The government was using our data. For months, the American government had no idea how many people were sick with COVID-19, how many were lying in hospitals, or how many had died.”

Sharing Information Beyond COVID-19

COVID-19 starkly revealed the lack of a coherent strategy to share public health information in a timely manner. But the problem existed long before 2020.

“California has a history of fragmented health information sharing,” Karen Ostrowski, principal strategist for data governance at the consulting firm Intrepid Ascent, told State of Reform reporter Eli Kirshbaum. California did not go the way of regions such as New York City, which has a large, public system that doctors and patients use to share patient information, Ostrowski explained.

“Public health emergencies aren’t the only times when we need the ability to share essential health information,” noted John Ohanian, the chief data officer and director for the Center for Data Insights and Innovation Office within the California Health and Human Services Agency, in a recent blog post for CHCF.

That holds particularly true for the most vulnerable patients, such as those with low incomes and health needs that fall into different silos of existing systems of government help.

California’s fragmented system means that doctors won’t necessarily be able to access a patient’s health history before they treat them. “Their inability to consistently share health data across the entire care team results in a lack of coordinated services, delays in care, and poor health outcomes,” Hong Truong, a senior program investment officer at CHCF, explained on The CHCF Blog.

Crucial Data

Updated and accessible health records could in turn be mined for information crucial to understanding public health emergencies like COVID-19, including test results, hospital admissions, and treatments administered.

“Coordinated statewide health information exchanges would automate collection of this key data, as well as information related to contact tracing, testing, and vaccinations,” Truong wrote.

Federally, the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (ONC) released long-awaited federal rules in March 2020 to spur nationwide progress on the collection and sharing of health data. The rules — more than 2,000 pages long — affect nearly every entity in the US health care system.

Eric Lander, President Biden’s science advisor, told Washington Post reporters Joel Achenbach and Yasmeen Abutaleb that, while improving the nation’s health data infrastructure wouldn’t happen overnight, it also won’t take decades. He estimated that a better infrastructure would be available in two to three years. That, he added, “is going to be useful not just in the next pandemic — it’s going to be useful in the next flu season; it’s going to be useful in the next measles outbreak.”

* CHCF president and CEO Sandra Hernández and board member Liz Gibboney serve on the Data Exchange Framework Stakeholder Advisory Group.

To send questions or comments, tweet at me with #EssentialCoverage or email me.

Heather Tirado Gilligan

Heather Tirado Gilligan is a journalist who has written for publications including Slate, The Nation, CNN, and the Washington Post. Previously, she was executive editor of the California Health Report, a news nonprofit covering disparities in health and access to health care. Heather received a master’s degree in journalism from UC Berkeley and a PhD in English from Rutgers University, where she studied race in American culture.

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