In a feat of science and data generation, two vaccines for COVID-19 underwent development, testing, and review by the Food and Drug Administration in under a year. On Dec. 11, the agency authorized the first one for emergency use, and this week certain health care workers and other high priority individuals began receiving doses. This success offers hope that the virus’ spread can soon be curtailed, but experts acknowledge that distributing sufficient doses to the entire country could take months, and several hurdles could undermine the rapid and unprecedented success in creating these vaccines.
With President-elect Joe Biden preparing to take office in January, recovering from the pandemic will remain a top national priority for the foreseeable future. To slow the growth of new cases and deaths in the short term and ensure the success of a vaccination drive in 2021, the incoming administration should focus on optimizing the use and exchange of available data to ensure that public health authorities get the information they need to effectively manage the COVID-19 response. Some steps that would help now—and would also support the response to future public health crises—could be taken within the first 100 days.
Pew recommends that the incoming administration:
Enforce regulations that bar information blocking
Public health authorities rely on timely and complete data from hospitals, doctor’s offices, laboratories, and other health care facilities. Without that information, they could face difficulties tracking a disease’s spread through a community, identifying at-risk populations, and determining what other interventions may be needed. Unfortunately, the data that public health authorities have received during the pandemic has often been incomplete. For example as much as 85% of COVID-19 data—such as lab results and case reports—does not include individuals’ race or ethnicity, and addresses are missing half of the time. This information gap isn’t new in health care, and Congress has provided tools to address it.
In the 21st Century Cures Act, passed in 2016, lawmakers created a new doctrine: With few exceptions, health data must be made available to anyone who has the right to access it, and failure to provide it constitutes information blocking. New rules, which include fines of up to $1 million for violations, take effect over the next two years. The Biden administration could use this authority to require that health care providers include complete demographic data, such as contact information, when ordering tests from labs. That’s critical because labs cannot share complete data with public health authorities if they have not received it in the first place.
Improve patient matching to support vaccine rollouts
Safe and effective COVID-19 vaccines are critical to ending the pandemic. However, developing the vaccines is only the first step. Ensuring that patients get the right vaccine and the right number of doses will be essential, especially because initial supplies will be limited. To do so, providers will need to check vaccination registries, the databases typically operated by states, to confirm whether a person received a vaccine and which one. It’s essential to match that information correctly. Otherwise, someone could receive a second dose of the wrong vaccine, which means that they might not get appropriate protection from the virus.
Improving matching requires consistent data elements—such as phone numbers and mailing addresses—as well as standards to ensure that different systems share those elements in the same format so that the right records can be located. In particular, research conducted before the pandemic shows that standardizing addresses would help link 3% of patient records that otherwise might not be connected. This could translate into thousands of new records matched per day generally, but it also has been useful in linking records held by vaccine registries.
The United States Postal Service (USPS) offers a tool to help online retailers standardize addresses and ensure that packages reach the right location. Congress is considering bipartisan legislation to make that tool available for use in health care; the Biden administration could also push USPS to do that on its own. In parallel, the Office of the National Coordinator for Health Information Technology (ONC), the federal agency that oversees health IT, recently launched an effort to standardize addresses across health care transactions. That initiative aims to yield agreement by the end of 2021, but it could improve matching for COVID-19 purposes if completed earlier.
In addition, the administration should ensure that expectations for using vaccine registries, including requiring standards for demographic data, apply to all locations where vaccines might be administered, such as pharmacies, doctor’s offices, and other locations.
Enhance telehealth capabilities with data access
As Americans have increasingly relied on telehealth to receive care during the pandemic, patients and providers alike continue to face challenges extracting data from electronic health record (EHR) systems. Despite the growing number of health care apps that can help patients manage their own care, integrating information from an individual’s EHR into these apps is often difficult.
Application programming interfaces (APIs) serve as “bridges” between systems and applications, helping to share information using agreed-upon technical standards. These tools enable easy and prompt access to data and allow two systems to more seamlessly communicate with each other. The Cures Act included provisions to expand their use, and ONC has finalized regulations that would require EHRs to use them to share patients’ data. However, because of the pandemic, those rules are not slated to take effect until the end of 2022.
Still, the federal government can help accelerate this transition. ONC can make clear that the rules will not be delayed again. At the same time, the Centers for Medicare & Medicaid Services could incentivize providers and vendors to implement standardized APIs before the rules take effect—such as with pilot projects developed through the Medicare innovation center.
The COVID-19 pandemic has highlighted many areas where America’s public health infrastructure needs improvement; health IT is one of them. The next administration has an opportunity to begin building a stronger health IT infrastructure in its first 100 days, something that not only could help address this pandemic but also prepare for any future crises.
Ben Moscovitch directs The Pew Charitable Trusts’ health information technology initiative.