How a Confidentiality Toolkit Helps Government Programs Share Data Responsibly
September 12, 2022
Americans who receive government services are often enrolled in multiple programs with each program requiring them to supply personal information to obtain benefits. This duplication can delay or obstruct the provision of services. Sharing information across multiple programs would solve this challenge, but federal and state statutes protecting data privacy and confidentiality are seen as limiting this option. Yet there are ways to share data while meeting these restrictions, says Westat’s Senior Study Director and Senior Economist Mary Gabay, M.S., who revised the Confidentiality Toolkit for the Administration for Children and Families (ACF). Here she explains how the new toolkit is helping ACF better support children, families, and individuals with multiple needs and how it can help other agencies responsibly share data.
Q: In addition to helping constituents more easily enroll in service programs, what are other reasons to share data?
A: Data sharing is important for case management and decisionmaking, informed policymaking for program development, program evaluations to measure performance, and for conducting additional research.
Q: What is ACF’s Confidentiality Toolkit and how does it help program staff navigate data privacy issues?
A: The Confidentiality Toolkit provides guidance to jurisdictions in how they can safely share personal data across programs to efficiently deliver effective services to their constituents without compromising their privacy. It includes updated federal and state laws regarding data confidentiality, offers guidance in navigating intersecting laws, and addresses misconceptions about what these laws allow and don’t allow. It also helps government agencies learn to remove technical and organizational barriers to data sharing and encourage them to conduct needed research using shared data to address existing and emerging challenges.
Q: How does the toolkit address supporting children and families?
A: The toolkit contains chapters on several ACF programs, including child welfare services, child support enforcement, child care services, Temporary Assistance for Needy Families (TANF), and the Low-Income Home Energy Assistance Program (LIHEAP). It also includes a chapter on the U.S. Department of Agriculture’s Supplemental Nutrition Assistance Program (SNAP). There are reviews of federal legislation and regulations regarding these services and a description of the circumstances under which data sharing is allowed and the associated confidentiality requirements.
Q: How can the toolkit be applied to other federal agencies?
A: Human service programs often share data to streamline program application processes, but there are other benefits to sharing data across sectors. For example, data sharing can help child welfare case workers better serve youth who are dually involved in the juvenile justice and child welfare systems. It can help the mental health system and Medicaid programs prevent children in foster care from receiving inappropriate psychotropic medications; and it can help schools facilitate school stability and educational improvement for children in foster care.
Q: What challenges did you face to complete this work and how did Westat’s team ensure success?
A: We needed to provide updated information on the large number of federal statutes protecting individuals’ and families’ confidentiality; many of these statutes had undergone quite a few changes since 2014 when the toolkit had last been issued. To successfully support this effort, we retained the legal expertise of the Inter-university Consortium for Political and Social Research (ICPSR) and the Future of Privacy Forum.
Westat’s expertise included disseminating and sharing restricted-use data, creating and maintaining secure databases, and effectively distributing toolkits. Also important was the data privacy and confidentiality as well as project management expertise provided by our Principal Investigator, Tom Krenzke, M.S., a Westat Vice President and Senior Statistical Fellow, and Project Director Janice Machado, M.B.A., a Westat survey methodologist and an Associate Director for Social Policy and Economics Research.
Q: Explain how the cases studies Westat is providing can support new data sharing methods.
A: The case studies provide in-depth, real-world examples of how organizations have solved various data privacy, confidentiality, and security challenges in sharing data—examples we can share with agencies hesitant to share data. Iowa’s Integrated Data System for Decision-Making is an example of secure data sharing and analysis to inform policymaking and decisionmaking for programs serving Iowa’s children and families. With the help of Frank Bennici, Ph.D., a labor economist and Westat Senior Study Director, we will be producing 2 to 3 of these case studies each year to help ensure that responsible data sharing can improve outcomes for human services program constituents.
Issue BriefYoung Children’s Consumption of 100% Fruit Juice by Racial-Ethnic Characteristics of Their Mothers
Congress authorized the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) as a pilot program in 1972 and made WIC permanent in 1974.…
PerspectiveCDISC Conformance and Compliance: So Many Resources, So Little Time!
Implementing the Clinical Data Interchange Standards Consortium (CDISC) standards required for data management, programming, documentation, and eCTD data submission can be challenging for many reasons…
Expert InterviewHow Will the Marine Corps Integrate Men and Women at Recruit Training?
Marine Corps recruit training is every bit as intense as it looks. Each morning starts hours before sunrise with a chorus of screaming drill instructors…