Challenges to Accessing Health Data During COVID-19

Samara Rosenfeld

An overwhelming volume of patients and lack of interoperability highlight challenges to accessing patient health data during COVID-19.

Now is the time to reexamine our country’s public health data. In a panel at Academy Health’s Datapalooza, experts discussed the gaps and barriers to reporting data at scale during the coronavirus disease 2019 (COVID-19) and the CDC’s vision for the future.

“I just want to remind everyone that really, in public health, we can’t do anything without data,” Paula Yoon, from the CDC, started.

Data are used to detect illnesses and outbreaks, to characterize the magnitude of outbreaks, the epidemiology of the disease, to monitor trends and risk factors, and to provide prevention intervention and mitigation measures. Case surveillance, though, is really the bread and butter of public health data use, Yoon said, which is where public health uses data on specific reportable diseases to really understand what’s happening in the population.

But there have been plenty of challenges with the current COVID-19 response.

For one, the volume of patients during the pandemic has been really overwhelming. Because of that, a lot of traditional ways data are collected on each case has been challenging. There has been a limited amount of data that have come from healthcare on clinical and demographic information — a majority of the information is coming from laboratory reports, which have limited amounts of data that are needed. Due to the high volume of sick patients, health departments have not been able to do the extra steps they might normally do to gather information on a case investigation that might help complete the information on the epidemiology, the travel history, and some of the demographics.

“Because of this, some of the information that we would normally have is somewhat limited,” Yoon said.

Another big challenge, as is typically the case when dealing with health data, is interoperability.

“The systems that we’re using in public health have really not been supported up to the level that has been needed over the past couple of years,” Yoon said. “Therefore, we have systems that really can’t talk to each other.”

A lot of data providers and analysts would pull from, such as vital records or immunization systems, are being shared manually through paper. This brings into account the challenge of pulling data together because when it’s manual, the information has to be transferred into the system.

“And because of this, we haven’t had as much complete and timely data that are really needed,” Yoon said.

The vision for the future is an interconnected public health infrastructure that protects the health of Americans in communities, she added. That can be achieved by strengthening and modernizing the public health infrastructure in the U.S. through science and collaborating across the healthcare and the public health enterprise at all levels.