Data Access is Key to Addressing Future Health Crises

Public health officials and organizations pivoted quickly to address the COVID-19 pandemic when it first began in March 2020, and health IT kept pace to support their efforts. But health IT still has a long way to go to sufficiently support public health, according to panelists at GovernmentCIO Media & Research’s health IT event last week.

“Health care is frequently called a system that doesn’t move fast, doesn’t change easily, is sort of dug-in. In fact, telehealth, telecare, transitioned almost overnight,” said Dr. Andrew Gettinger, chief clinical officer at the Office of the National Coordinator for Health Information Technology.

Jonathan Weiner, founding director for the Center for Population Health Information Technology at Johns Hopkins University, offered hard numbers: “We’ve gone from less than 1% [of telehealth services] to about 25 to 30% nationally overnight, and we’re not going back.”

Gettinger said the reason behind the quick transition was fast-moving federal agencies “making it possible.”

But in order to move forward, public health organizations need better access to public health data.

“If we’re going to learn anything about COVID or new problems, we’re going to need to be able to record it and then track what happens with patients,” Gettinger said. “We’re looking forward to seeing documentation of the vaccines and how long they’re effective and what their complications are. Implementation of systems across the country, both within and outside the government, went from a complicated hands-on affair to being able to be implemented remotely.”

Gettinger hopes lawmakers will address information-sharing between public and private health organizations in order to accelerate the flow of information so they can keep abreast of public health crises.

In Weiner’s view, the COVID-19 pandemic showed the opportunities health IT has in order to improve public health in meaningful ways.

“Although everybody has really stepped up to the plate in every way they can, it shows the structural challenges we’ve had in the public health domain,” he said. “It’s shown, as much as people have tried, our public health surveillance is now two or three times better than it was a year ago with the hard work public and private sectors have done, but it’s probably one-tenth of what it needs to be. [It] shows the lack of interoperability we have specifically in public health and medical care integration.”

Weiner favors an aggressive approach to addressing these public health data gaps.

“It’s not good enough that a hospital shares data with another hospital across the street, it’s essential all public health agencies have the same standards as well,” he said. “Social data is critical. Some federal agencies don’t always view themselves as being medical or health agencies, but have a lot to offer.”

Jonathan Alboum, federal CTO and principal digital strategist at ServiceNow, hopes lawmakers will learn from health IT stumbles during the pandemic and help improve access to public health data for the next crisis.

“If we do not have the ability to quickly access the data sets we need, we’re not going to make the best decisions and that could cost us lives,” he said. “We sometimes use privacy as a reason to not do something. We need flexibility in our regulations and the ability to move fast when these requirements present themselves. We also need regulations around various policies so they can bend when they need to, appropriately.”

Weiner cited the 400,000 Americans who have died due to a lack of sufficient public health surveillance.

“All of us want our medical data private, but people are dying,” he said. “We have about three times the death per population than China. Granted, privacy is not such a big deal [there], but somewhere in between, there’s a balancing act. We do need to balance public good. In Maryland, we had a recent project where we maintained privacy and confidentiality very strictly for an opioid project with 10 different databases.”

By focusing on interoperability, data standards and secure information-sharing practices, Gettinger and Weiner believe the U.S. can revamp its approach to public health for the better.

“This is going to take cooperation from all branches of government,” Weiner said. “The bridge between medical care and public health must also be spanned, and that’s why we started the Center for Population Health IT.”