HHS lacks standardized framework for interagency data sharing

The Department of Health and Human Services lacks a consistent, transparent and standardized framework for interagency data sharing, according to the HHS Office of the Chief Technology Officer.

A report, written by the Office of the Chief Technology Officer and released on Monday, identified key challenges that impede the sharing of restricted and nonpublic data among HHS agencies.

“For the first time in the department’s history, a systematic examination of data sharing practices was undertaken across its agencies including CMS, FDA, CDC, NIH, AHRQ and others,” wrote HHS Chief Data Officer Mona Siddiqui, MD, who led the study, in a September 17 blog. “The findings describe processes that lack transparency and reliability, a regulatory landscape that is difficult to navigate, technical barriers that prevent ease of information sharing, and resource constraints that inhibit data sharing from becoming a programmatic priority.”

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Siddiqui and the data initiative team at the Office of the Chief Technology Officer interviewed agency leadership and staff from 11 HHS agencies. What they found was that “each agency operates within its own statutory authority and each dataset can be governed by a particular set of regulations” that “leads to data sharing occurring largely on a project-by-project basis.”

In total, Siddiqui’s team identified five core challenges that inhibit the sharing of restricted and nonpublic data among HHS agencies:

  • Process for data access: HHS lacks consistent and standardized processes for one agency to request data from another agency. Agencies are not accountable for their responses to requests for access to internal data. If access is inappropriately denied or if access is significantly and inappropriately delayed, there are no consequences.
  • Technology for data access and analysis: The technical formats and approaches to sharing restricted and nonpublic data across agencies vary widely. The analytical tools to interpret data can be redundant. In addition, agencies are tracking who has access to restricted and nonpublic data but can be challenged in auditing analyses for misinterpretation and misuse.
  • Regulatory environment: Each data collection effort has statutes, regulations and policies that govern the collection of and access to the data. Some statutes limit access to data and its use. To increase access or broaden use, changes to the relevant statutes may be required.
  • Disclosure risk management: The risk of identifying geographic areas or violating individual privacy increases as more variables and more granular data are collected and shared, often leading to an increase in limits on microdata access.
  • Norms and resource constraints: Data representatives do not see the demand for sharing restricted and nonpublic data; view the public use files as sufficient for the majority of analyses; and, for certain data programs, view data sharing requests as ad-hoc or special. Strained resources, fear of misrepresentation of the data and reluctance to critique a sister agency for unsatisfactory data sharing practices all contribute to maintaining the status quo.

Without addressing these challenges that keep the agency’s information largely in silos, HHS will not become a data-driven organization that bases its policies on evidence, contends the report.

In particular, auditors discovered that the “lack of standardization at the departmental level for data governance and sharing” as well as the “lack of accountability for timely response to requests” has resulted in HHS agencies often having no means to access interagency data in an efficient manner.

“If data is to be leveraged as an asset using advanced analytic tools and predictive modeling, the use of data must be essential to a departmental strategy rather than purely individual project based,” concludes the report. “Efforts are underway to construct an enterprise-wide data sharing framework, through validation and collaboration with agencies and using an agile development approach. Ultimately, success will require a long-term investment, continued collaboration, and the iterative demonstration of value from data to drive the culture change essential to transforming HHS.”

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