Data interoperability at the federal level requires cross-sector collaboration

As the first national coordinator for health information technology in 2004, David Brailer, current executive vice president and chief health officer at Cigna, said he and his team had four priorities: increase clinical decision-making quality, advance public health, accelerate consumer self-care and self-empowerment, and advance clinical research and science at the bedside.

At Tuesday’s event, presented jointly by Ellison Institute and Harvard T.H. Chan School of Public Health, Brailer said technology has improved clinical decision-making substantially with EHRs, but consumer empowerment isn’t quite where it should be. 

Though there’s a robust investment community around digital options for consumers, clinical research is still disconnected from patient care, and no substantial change has been made in the public health sector.

“We have not made a step function change despite the potential interoperability. Underlying all that, I’m quite optimistic. We’re at the part of the S-curve where it starts really gaining leverage,” Brailer said. 

Though there’s been some progress, there’s been a dramatic shift in the public’s perception of government due to political polarization, including an increased lack of trust when it comes to public health, said Dr. Julie L. Gerberding, CEO of the Foundation for the National Institutes of Health.

Gerberding is also co-chair of CSIS’ Commission on Strengthening America’s Health Security, which released a report in January spotlighting pressing problems that need to be addressed inside of the Centers for Disease Control and Prevention (CDC) due to the growing distrust that occurred during the pandemic.

The report highlighted major themes regarding data interoperability, including issues around data acquisition, timeliness, interpretation, completeness and reliability.

“The report calls for more investment, for Congress to take some actions to improve the authorities around data acquisition and sharing, but also to invest more in the data modernization effort, and certainly to extend the reach of the capacity of trained public health officials by embedding them locally,” Gerberding said. 

A general consensus across the panelists was that data is disconnected between local, state and federal entities, and between the public and private sectors. Gerberding said those who hold data often hold power, data is proprietary, and some people profit off of data. 

“We have a big challenge here in being a federation of states, and there is still no authority to mandate data reporting, even in a public health emergency. We have to go through a very complicated and onerous process to be able to exchange and search your information outside of the jurisdiction. And that’s a major choke point which hasn’t been overcome. I am not sure how we’re going to get past that one. So it’s hard for me to be optimistic,” Gerberding said.

Still, the private sector, with its advanced technology and resources, could help with data interoperability, said Dr. David Feinberg, chairman of Oracle Health.

“We have a product that’s coming out that takes all of the information on a patient from outside records, puts it into a longitudinal format, and then we thought, well, we should deduplicate it, because there’s probably duplicate information,” Feinberg said.

The panel’s moderator, Michelle A. Williams, dean of faculty of Harvard T.H. Chan School, pointed out the nation’s environment for health data is currently a patchwork with different regulations and systems between the federal government and the states. 

Feinberg said companies need to be shown that increasing investment in data interoperability is good for business, or as Williams put it, “appeal to companies’ enlightened self-interest.”

“I think the sales pitch is for public health, not for public health data,” Brailer said.

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