Confidentiality Toolkit Preface:
In issuing this updated Confidentiality Toolkit to support state and local data sharing efforts, we hope to bring greater clarity to the rules governing confidentiality in programs administered by the Administration for Children and Families (ACF) and certain related programs. The toolkit provides guidance, including examples, for addressing confidentiality requirements in a manner fully consistent with governing laws and underlying policies.
Human services agencies have recognized for decades that coordination and collaboration across multiple dimensions of related services can enable more effective outcomes for children, families, and individuals with multiple needs. Along with direct improvements to the delivery of services, data sharing allows federal, state, and local agencies to conduct the research and analysis needed to address existing and emerging challenges. For example, access to high quality data linked across programs and sectors will allow government agencies to develop an informed response to the devastation caused by the COVID-19 pandemic.
Many government entities have created data warehouses to support operations and/or improve the decision-making process. They have met the technological challenges associated with collecting, standardizing, linking, storing, and accessing data safely and securely. However, having the ability to securely and accurately link data across programs is not a panacea. Improved information sharing is not simply a technological challenge, but also has legal and societal constraints. Individual programs often have statutorily established confidentiality requirements to protect the privacy and dignity of individuals and families in need of assistance or services. The confidentiality provisions serve important public purposes. In some cases, confidentiality provisions may save lives, as in domestic violence programs, for example. In other cases, they are grounded in the recognition that a family in need of a particular service should not be compelled to share highly personal and private information across a full range of government agencies as a condition of receiving help.
In spite of their vital public purposes, the complexities resulting from multiple varying confidentiality provisions can be a significant impediment to state and local efforts to share data. The reconciliation of privacy requirements raises a number of questions that must be addressed, including whether a particular provision is federal, state, or local; whether it is a requirement or just a long-standing practice; whether there are exceptions; and if confidentiality can be waived through consent, how that consent can be effectuated.
We recognize that this Confidentiality Toolkit does not address all programs and every potential issue that may arise related to confidentiality and data privacy, but we hope that it will be helpful in advancing state and local efforts to improve human services delivery and outcomes through appropriate and responsible data sharing.