Agency leaders want to embrace information sharing, but right now it’s uncharted territory.
Health and Human Services Department leaders want agency offices to start sharing more data with each other, but rank-and-file employees say the rules for doing so are hazy at best.
With no agencywide guidance for sharing information and stiff penalties for breaking confidentiality and patient privacy laws, HHS employees are reluctant to hand over data to other organizations even within the same department, according to a report by the HHS chief technology officer.
“While the value proposition for open data has taken root in the marketplace, government agencies must likewise use its data as a strategic asset,” officials wrote in the report published Monday. “[HHS data] are largely kept in silos with a lack of organizational awareness of what data are collected across the department and how to request access.”
The report, which is based on interviews with senior leaders and employees at 11 HHS components, details the procedures and barriers for sharing restricted and non-public data among different agency offices. It comes as HHS officials work to reform data policies so groups can more readily access information to improve and inform their decisions.
Measures like the Privacy Act and Health Insurance Portability and Accountability Act have for years aimed to protect sensitive medical information from falling into the wrong hands. While HHS recognizes the value of such laws, their “arduous” compliance standards can get in the way of efficient data sharing, officials said.
Furthermore, because HHS lacks a broad framework for sharing data, components must essentially interpret those regulations for themselves, they said. In other words, when one office asks for a dataset from another, the decision of whether to share that information largely comes down to the person reading that request.
The process leads not only to inconsistent decisions, but can also keep data analysts waiting up to a year to receive the information they requested, according to the report.
And that’s if they get it at all.
Officials said because agencies aren’t accountable for responding to internal data requests, if a request is “inappropriately” denied or delayed, there’s nothing anybody can do about it.
Still, HHS has made significant strides in opening its data in recent years. The agency has released some 1,500 datasets to the public and embraced data analytics in the fight against the opioid epidemic.
Though working out the nuances of data governance across the agency will take time, just starting the conversation around information sharing is a big first step, HHS Chief Data Officer Mona Siddiqui, who leads the team that published the report, told Nextgov in July.
“This is really a long-term strategy for the department,” she said. “Transforming a large organization into one that uses data in how it operates and leverages data as an asset is not really a six-month or a two-year journey. It’s really about a 15- to 20-year commitment.”