HHS is Striving to Share and Better Use Data

Published: September 27, 2018

HHSInformation TechnologyPolicy and Legislation

In mid-September, HHS released its first-ever report on the status of data sharing within the department as part of an effort to establish an enterprise-wide data strategy.

The report was led by HHS Chief Data Officer Dr. Mona Siddiqui whose team conducted interviews with agency leadership and staff from eleven HHS agencies, including NIH, CDC, FDA, CMS, and AHRQ. The report aims to identify opportunities and challenges for sharing high value data assets between agencies.

Much promise lies in the application of artificial intelligence, machine learning and other data-reliant emerging technologies.  However in order to realize the benefits of such IT advances, a comprehensive enterprise-wide data governance framework needs to be developed and implemented.  The 29 HHS agencies collect and use enormous amounts of data daily in order to fulfill their missions.  However to date, much of this data is locked in silos and unknown and unavailable across HHS agencies.

HHS’ desire to become a more data driven organization also aligns with the President’s Management Agenda, Cross-Agency Priority (CAP) Goal #2, Leveraging Data as a Strategic Asset.  Additionally, multiple objectives under the HHS strategic goal of Promoting Effective and Efficient Management and Stewardship involve sharing and using data more effectively.

The HHS report states, “A cohesive enterprise-wide data governance strategy that promotes data sharing, drives business value from leveraging data as an asset, and bases policies on evidence is essential to a long-term data-driven vision of HHS.”

HHS’ analysis identified five challenges that need to be addressed as part of the department’s enterprise data governance strategy in order to fully capitalize on data within the department:

  • Process for Data Access:  HHS lacks consistent and standardized processes for one agency to request data from another agency.
  • Technology for Data Access & Analysis:  The technical formats and approaches to sharing restricted and nonpublic data across agencies vary widely, and the analytical tools to interpret data can be redundant.
  • 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. In order 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 & 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.

Next Steps:

Understanding the current status of data sharing in the department is just the first step according to Dr. Siddiqui during an interview with GovernmentCIO Media.

“While HHS is working on developing processes to enable data sharing and addressing technical needs, it also needs to engage in real collaboration and change management with agency partners, and demonstrate value from using data,” Siddiqui stated.

The second phase of creating an enterprise-wide data sharing framework is to define the envisioned future state of data sharing in conjunction with agency partners. Phase three involved using an agile approach to develop a governance structure and tools to support data sharing.  According to Siddiqui, HHS is in the planning stages of phase three and hopes to deploy at solution by the end of the year. 

The HHS report also addresses the need to build workforce capacity, stating that data science training programs have already begun with positive feedback from HHS staff.

In addition, the report states that HHS is in the process of identifying use cases and demonstrating the business value of data sharing. “Creating a robust technical environment for data analysis, workflow management, and streamlining data acquisition will be essential,” according to the report.

“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,” states the report.