Breaking COVID-19’s chain of transmission requires effective physical distancing, contact tracing and rapid analyses of demographic data to reveal illness clusters and populations at high risk, such as people older than 65, Latinos and Blacks. Now, as the latest and largest wave of infections surges through the country and hospitalizations reach record numbers, it’s more important than ever that federal officials use the 21st Century Cures Act — which won overwhelming bipartisan support in both chambers of Congress before being signed into law by President Barack Obama in late 2016 — to speed the flow of patient data to state and local health departments.
The problem is that, according to epidemiologists, up to 80 percent of COVID-19 laboratory reports omit individuals’ addresses, phone numbers, or race. This information gap deprives the nation of opportunities to contain outbreaks, save lives, and make data-driven policy decisions to fight the pandemic. In August, for example, one of the nation’s largest commercial labs took four months to send the state of Florida a backlog of 75,000 test results — data that state leaders lacked when deciding whether to ease restrictions on businesses and schools.
This work need not take so much time and effort; providers usually collect this information and input it in electronic health record systems. But too often, these systems aren’t configured to share the information with the testing laboratories when test orders are placed that, in turn, report results to state and local agencies.
To make matters worse, even when providers send the labs the necessary patient addresses, phone numbers and demographic data, many of the technology systems that the labs use aren’t set up to accept that information. And some labs deliver test results to health departments in outdated formats, forcing public health agencies to waste valuable time on data entry and introducing the opportunity for error. Regularly, authorities receive more than 1,000 COVID-19 case reports per day via fax — a means of transmission that has been surpassed in speed and convenience over the past three decades by major advances in information technology.
These practices fit into a larger pattern of behavior known within the health care arena as information blocking: a consistent failure to effectively share data with other doctors and health systems that are authorized to view it.
Congress gave the Department of Health and Human Services the power to address this problem in the 21st Century Cures Act, which banned information blocking. Under Cures Act rules finalized in March of last year, health care facilities, labs and EHR vendors violate the law if they fail to either share patient data with authorized organizations or to use commonly available standards for exchanging information electronically.
HHS leaders can and should use their authority to ensure that vital data on coronavirus cases is transmitted in formats that state and local officials can readily use. However, the department has proposed to enforce compliance for technology vendors while saying little about plans aimed to work collaboratively with clinicians and labs.
That needs to change. HHS should take a collaborative, broad and firm approach to enforcing information-blocking rules during the pandemic by issuing regulations or other policies that make clear that the department’s information-blocking rules apply to health care providers and labs when they send COVID-19 data to health agencies to work towards establishing a true “culture of health.” These organizations and their EHR vendors should have a strong incentive to abide by such rules — because the Cures Act allows HHS to levy fines up to $1 million per infraction.
These COVID-specific information-blocking policies should, at a minimum, have these two elements: First, patient data, including the person’s phone number, address, race and ethnicity, must accompany testing orders and reports. (The criteria could mirror HHS guidance released in June for lab reports on COVID-19 tests.) Second, health care providers and labs must exchange and report information electronically using widely available standards, barring extenuating circumstances such as a health department’s inability to receive digital files. Failure to meet either requirement would be considered information blocking.
The second goal is within reach: Most health care systems and EHR vendors already have adopted standards developed by the nonprofit Health Level Seven for digitally sharing the types of health data that accompany test orders and results. The technology exists; providers and labs should use it.
Hospitals and labs might argue that they are stretched too thin by high caseloads and test volumes to be able to improve their digital record systems now. But sharing information in rapid seamless electronic means is critical to the country’s public health response, and health care facilities and labs can update their existing record systems with minimal time and expense. In fact, many have already deployed technology that allows facilities to send their test results to one system and then automatically route them to the correct public health department.
To address the concern that modernizing technology to improve information sharing is too burdensome during the pandemic, the requirement could be limited to COVID-19 reporting for the duration of the public health emergency. This would allow health care providers — who have been wary of penalties for information blocking — to focus resources on upgrades needed to support pandemic response.
The failure to share data quickly and accurately has hobbled the efforts of state and local agencies to track the pandemic’s spread. Federal regulators took steps at the beginning of the pandemic to improve data exchange throughout the health care system. Now they should apply and enforce the Cures Act’s ban on information blocking to protect Americans as the coronavirus continues to rage.
Janet Hamilton is the executive director of the Council of State and Territorial Epidemiologists. Ben Moscovitch directs The Pew Charitable Trusts’ health information technology initiative.
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