health data (Supphachai Salaeman/Shutterstock.com)

Getting health data in shape

This last year's focus on COVID-19 has put the spotlight on public health systems and their underlying data. Many of the challenges agencies face are common to any enterprise, but structuring and sharing health data comes with additional complexities.

Participants

Jothi Dugar
Chief Information Security Officer, NIH Clinical Center, National Institutes of Health

Cynthia Hilsinger
Chief Knowledge Officer, Defense Health Agency

Michelle Holko
President Innovation Fellow, General Services Administration

Sachiko Kuwabara
Director, Office of Risk Management and Operational Integrity, Centers for Disease Control and Prevention

Christos Makridis
Senior Advisor, National Artificial Intelligence Institute, Department of Veterans Affairs

Ratima Kataria
Deputy CIO, Health Resources and Services Administration, Department of Health and Human Services

Dr. Greg McDavitt
Director, Global Healthcare and Life Sciences, Salesforce

Dr. Don Rucker
National Coordinator for Health Information Technology, Department of Health and Human Services

Bobby Saxon
Deputy Director and Deputy CIO, Centers for Medicare and Medicaid Services

Bonnie Walker
Director, IT Strategic Planning and Governance, Office of Information and Technology, Department of Veterans Affairs

Note: FCW Editor-in-Chief Troy K. Schneider led the roundtable discussion. The Dec. 4, 2020, gathering was underwritten by Salesforce, but both the substance of the discussion and this recap are strictly editorial products. Neither Salesforce nor any of the roundtable participants had input beyond their Dec. 4 comments.

At a recent virtual roundtable of federal health IT experts, participants explored some of the data challenges their agencies are working through. The discussion was on the record but not for individual attribution (see below for the list of participants), and the quotes have been edited for length and clarity. Here's what the group had to say.

It all starts with the data

Participants agreed that data alone won't get the job done, but nearly every other goal — such as strengthened security, improved patient outcomes and well-designed user interfaces — depends on better data governance.

The pandemic has made clear that "threats are moving faster than our data," one official said. Components within a single agency lack the ability to quickly share accurate data internally, let alone "with our state, tribal, local and territorial partners."

"A number of our jurisdictions still rely on paper-based systems," the official added. "That's just the reality of where we are."

Internally, the obstacles are more cultural than technical, another participant said. "It wasn't that we didn't have enough data. It wasn't that we didn't have experts who understood that data. It's really that we don't work holistically.… Instead of having a culture that defaults to sharing, we have a culture that defaults to silos. And I don't think this is unique to my agency."

The official added that data owners often object to sharing because of concerns that outside users will misconstrue or misuse the dataset, "and so instead of addressing it from a data understanding and metadata approach, we default again to not sharing."

That attitude is compounded by the differences in data structures across systems, others said. "We've had several electronic health systems and quite a few other charting systems," one official said, and each of them coded data differently. Something as simple as how a date is formatted can require significant data scrubbing and add to the fatigue for clinicians and other users when they're trying to input data.

The group agreed that the initiatives at the departments of Defense and Veterans Affairs to move to interoperable, Cerner-based EHR systems will help, as will requirements imposed by the 21st Century Cures Act. That legislation, passed in 2016, mandates the sharing of health data in secure and machine-readable formats, with major deadlines set for December 2022 and December 2023.

"The forcing function of the Cures Act is getting information from APIs," one official said. "I think it will allow all of the agencies on this call to start rethinking each of these individual pain points."

Agencies need to "dissect today's information flows and figure out what APIs they're going to have available to liberate data from some of the silos," that official said. "There are a lot of opportunities out there to rethink these things, even within our current economic constraints."

The sharing that results will lead to better health outcomes in addition to more efficient systems, another participant said. "You absolutely cannot discover things in your dataset unless you have a big enough dataset," he added. "And that requires data interoperability." Part of the answer is to build new federal systems "on a flexible cloud-based environment that enables you to build these tunnels, to connect these silos."

A longer version of this article was first posted to FCW, a sibling site to GCN.

About the Author

Troy K. Schneider is editor-in-chief of FCW and GCN, as well as General Manager of Public Sector 360.

Prior to joining 1105 Media in 2012, Schneider was the New America Foundation’s Director of Media & Technology, and before that was Managing Director for Electronic Publishing at the Atlantic Media Company. The founding editor of NationalJournal.com, Schneider also helped launch the political site PoliticsNow.com in the mid-1990s, and worked on the earliest online efforts of the Los Angeles Times and Newsday. He began his career in print journalism, and has written for a wide range of publications, including The New York Times, WashingtonPost.com, Slate, Politico, National Journal, Governing, and many of the other titles listed above.

Schneider is a graduate of Indiana University, where his emphases were journalism, business and religious studies.

Click here for previous articles by Schneider, or connect with him on Twitter: @troyschneider.


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