How President Biden Can Improve Health Data Sharing For COVID-19 and Beyond

Case numbers, hospitalizations, and widespread loss of life have shown that the United States was not fully prepared for the COVID-19 pandemic on many fronts, including the inability to quickly share test results and data on the spread and severity of the virus. The Biden administration plans to work with Congress to respond to the coronavirus, but unless these issues are resolved, challenges with sharing data could continue to hamper efforts to track the virus’s spread and who has been vaccinated.

This blog post proposes three steps the new president can take under existing law to immediately improve the flow of information about the pandemic—and leave the nation better prepared for the next public health crisis.

Require Faster, Better Data Sharing

Public health authorities need quick access to vital information such as test results during a pandemic. The data is essential to conduct contact tracing—a necessary tool to stem contagion, track the spread of disease geographically, and acquire key demographic data that can identify higher-risk populations, including older people and those likely to be hit hard by the coronavirus because of asthma, diabetes, or other underlying health conditions. Unfortunately, we’ve seen enormous problems in sharing COVID-19 test results.

Although health care providers generally collect from patients the demographic data needed to order lab tests and help public health officials track the effect of a disease on different populations, their systems often fail to communicate this information quickly and effectively to testing labs and public health authorities. That’s because different electronic systems can’t seamlessly exchange data, and many facilities—such as pop-up testing sites—still use outdated methods, including fax machines, to communicate results. When labs don’t get the information from health care providers, they can’t report it to public health agencies. This limits the availability of important data and slows response time just when speed is essential.

As the pace of COVID-19 vaccinations increases, the same problems will hobble efforts to track who receives the vaccines and when, a process made more difficult because each patient must receive two shots over a strictly monitored time period. Keeping track of the data will be a gargantuan task, especially when dealing with the general population, which may not have the benefit of getting vaccinated in their place of work or residence. But gathering and sharing this information quickly with public health authorities will be essential to the success of this and future vaccine campaigns.

Fortunately, the federal government already has the power to address this problem under the 21st Century Cures Act, which became law in 2016. The Cures Act requires health care providers and companies that make electronic health record (EHR) systems to share data with any other organization authorized to receive the data by outlawing a practice known as “information-blocking,” which is when a patient’s health data isn’t shared with an entity that has a legitimate need to access it. The penalty for failing to properly share data can be as high as $1 million per infraction.

The Department of Health and Human Services (HHS) has the power to enforce the Cures Act, but so far has only proposed how it will penalize EHR vendors. HHS leaders can and should use their authority to enforce information sharing by clinicians and testing labs—an approach that can quickly be put in place through additional guidance or an interim final rule. At a minimum, for the duration of the COVID-19 public health emergency, HHS should ensure that standard patient data—including a phone number, address, and race—accompany all testing orders from providers and reports to public health agencies and deem the failure to do so as information blocking subject to penalties.

Update EHR Requirements To Improve Key Public Health Capabilities

To improve public health for decades to come, the administration can use the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, which allows federal regulators to set overall requirements for EHRs.

Under the act, HHS could require that EHRs include functions that support reporting to public health agencies in four key areas:

• Submission of complete, electronic data on lab orders and results to track infectious diseases
• Transmission of case reports that include sections of patients’ EHRs to give public health authorities the details they need to respond to public health threats
• Bidirectional communication with immunization information systems to track whether patients receive appropriate vaccinations or need additional shots
• Syndromic surveillance, in which health officials use data, stripped of names and personal identifiers, to detect—far more quickly than traditional methods of disease surveillance allow—possible outbreaks of new diseases and disease hot spots

HHS officials should require EHR systems to support each of those cases as a condition for certification and set standards—that EHR systems must follow—for capturing the right data and making it easily accessible to public health agencies. But the fact that the standards are in place and the capabilities exist won’t ensure compliance; health care systems need a strong incentive to participate. Fortunately, the HITECH Act gives the executive branch the authority to facilitate information sharing among health care systems and could mandate public health reporting as part of that effort. In particular, public health data sharing could become a requirement of the Centers for Medicare and Medicaid Services’ (CMS’s) Promoting Interoperability Program, through which hospitals and providers must meet certain criteria in the exchange of data or can face Medicare payment cuts—a powerful incentive for most providers.

Make API Access Free For Public Health And Expand Data To Improve Telehealth

Through implementation of the Cures Act, HHS has also set standards for information sharing that all EHRs must adopt by the end of 2022, including how they use application programming interfaces (APIs) for health data. APIs are software tools that allow different systems to interact and exchange data—in this case, making information about patients’ medications, allergies, medical history, and test results more accessible to physicians and patients in standard formats. This is especially important during the pandemic, when patients increasingly rely on virtual visits instead of going to medical offices to get their records.

EHR vendors charge hospital systems and medical application developers for the use of APIs as part of their business model. But HHS officials recognize that among the great benefits of digital health records are that patients can see their own data, make sure it’s accurate, and participate more fully in their own health care. In its rules implementing the Cures Act, HHS ordered that individual patients do not have to pay for access to APIs and instead can use smartphones and other digital devices to retrieve their data at no cost to them or their providers.

Patients obviously benefit from free access to their own health data. But society will also benefit from having public health data available at no cost. As such, HHS should require that use of APIs for public health reporting is free so that local, state, and federal governments can obtain the data they need. In fact, some vendors have recognized the importance of such data and have made API-based public health reporting free for COVID-19.

But HHS can do even more to use the power of digital data to improve public health while maintaining existing privacy protections. As of now, the list of standard data that HHS will require does not include some key elements of patients’ medical records, including X-ray and MRI images, travel history, and social determinants of health. The Biden administration should expand that list to help provide a richer database for public health agencies to use and to equip patients with the information they need. For example, public health officials should have more information about which countries a patient has visited, allowing these officials to quickly track infectious disease outbreaks and other emerging health risks, including a viral pandemic.

This approach can also help patients better manage their own care and improve the telehealth services that have become especially important during the pandemic. Patients should not have to physically transport their records from one doctor’s office to another, and telehealth doctors should be able to see those records whether they’re around the corner or across the country from their patients. Implementation of expanded, standardized APIs can help achieve that goal.

Change is also needed at HHS—and quickly. Because of the ongoing COVID-19 pandemic, the Trump administration delayed the implementation of the HHS rules from May 2022 to the end of that year. The Biden administration should signal that there will be no further delays and accelerate implementation and deployment of APIs. For example, CMS can provide incentives to implement this technology sooner by developing early pilot demonstrations for providers to make data available to patients and clinicians via standard APIs. And to encourage these providers to take this step, CMS should provide reimbursements or other incentives.

Thanks to the bipartisan work of Congress when he was vice president, the new president has the tools available to improve health information technology to fight the COVID-19 pandemic today and enhance public health surveillance for the future. These are extraordinary times, and the coronavirus has laid bare the problems we face with outdated health information technology. There’s no time to waste.

Ben Moscovitch directs the Pew Charitable Trusts’ health information technology initiative.

Ben Moscovitch, “How President Biden Can Improve Health Data Sharing For COVID-19 and Beyond,” Health Affairs Blog, March 1, 2021, https://www.healthaffairs.org/do/10.1377/hblog20210223.611803/full/, Copyright © 2021 Health Affairs by Project HOPE – The People-to-People Health Foundation, Inc.