The ability to share, receive, and analyze data is a core function for public health departments facilitated by data use agreements (DUAs). Executing DUAs, also known as data sharing agreements (DSAs), involves people at all levels of a public health agency with different types of expertise, including epidemiology, informatics, law, data governance and information technology. To assist public health professionals in understanding DUAs, the Public Health Law Center has curated this list of resources which will be updated periodically. The information is grouped into three broad categories: general resources on legal considerations related to public health data sharing; resources relevant to state health departments; and resources relevant to Tribal health departments. Finally, there is a short list of helpful websites from partner organizations.
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General Resources on Legal Considerations Related to Public Health Data Sharing
- Finding a way Forward: How to Create a Strong Legal Framework for Data Integration
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This report from Actionable Intelligence for Social Policy provides an excellent starting point for public health departments that want to understand the big picture when it comes to establishing strong DUAs and related processes. Its aim is to support government agencies in the work of exchanging, linking, and using data.
- Pathways to Yes: A Legal Framework for Achieving Data Sharing for Health, Well-Being and Equity
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Developed by The Network for Public Health Law and Data Across Sectors for Health, this resource includes detailed case studies, data flow maps, and data source charts—all separated out by data source and by type of partners—to help the reader understand and address typical challenges in the data sharing process.
- Checklist of Information Needed to Address Proposed Data Collection, Access and Sharing
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The Network for Public Health Law has a range of resources related to public health data sharing. The checklist highlighted here lists the questions that public health practitioners should consider before talking to their attorneys about DUAs with the goal of helping them provide relevant information to commonly asked questions about proposed data collection, access, and sharing.
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Resources on Legal Considerations Related to Public Health Data Sharing for States
- 2024 North Carolina Department of Health and Human Services Data Sharing Guidebook
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The experts in the Data Office of the North Carolina Department of Health and Human Services (NCDHHS) prepared this guidebook in collaboration with Actionable Intelligence for Social Policy to establish clear practices and processes around safe, effective, and efficient public health data sharing. The guidebook includes practical tools such as data flow diagrams, a set of questions to guide data request pathways, a template of a data request form, an example of NCDHHS’ high-value asset data inventory, and NCDHHS terms and conditions of data access and use.
- 2024 Washington State Public Health Data Sharing Law & Policy Review: Final Report
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The health department in Washington State commissioned a report to assess state laws and policies that apply to public health data sharing and to recommend legal and policy strategies to improve data sharing processes in the state. STLT jurisdictions may find Washington State’s 2022 data modernization needs assessment and gaps analysis summary a useful companion to the 2024 report.
- California Health and Human Services Data Exchange Framework: Single Data Sharing Agreement
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In 2022, California’s Health and Human Services Agency (CalHHS) created a Data Exchange Framework (DxF) which is a statewide DUA that expands the secure exchange of health and social services information. Although not created for public health data sharing specifically, local health departments and other government agencies can sign the agreement. The agreement may serve as a template for other jurisdictions considering this type of multi-stakeholder approach to data exchange. This factsheet provides an overview of the DxF initiative and timeline.
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Resources on Legal Considerations Related to Public Health Data Sharing for Tribes
- Tribal Data Sharing Agreement Checklist for Use by State and Tribal Nations
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Prepared by the American Indian Health Commission for Washington State, this checklist provides recommended items for state agencies to include when developing their DUAs with Tribes.
- Data Governance Strategies for States and Tribal Nations
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This factsheet from the Network for Public Health Law summarizes resources on establishing data governance policies and practices when working with Tribes. Although not focused specifically on DUAs, this resource provides guidance on how to establish a policy framework, a trust agreement, and a decision-making oversight body, all of which are necessary for ethical and effective data sharing.
- Enhancing Data Access to Improve American Indian and Alaska Native Health: A Framework for State and Local Public Health Officials
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Prepared by the Council of State and Territorial Epidemiologists and a workgroup that included representatives from several Tribal Epidemiology Centers, this policy brief provides a practical framework to state and local public health officials in support of increased access for Tribal public health authorities to data traditionally held by local, state, and federal public health agencies.
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Questions?
For legal technical assistance on public health data sharing agreements reach out to Manel Kappagoda (manel.kappagoda@mitchellhamline.edu) or Jeneé Jenkins Saffold (Jenee.JenkinsSaffold@MitchellHamline.edu) at the Public Health Law Center. This resource is part of a series of factsheets prepared by the Public Health Law Center.
This resource is part of a series of factsheets prepared by the Public Health Law Center in partnership with the Council of State and Territorial Epidemiologists for public health managers in State, Tribal, Local, and Territorial health departments.
The development of this resource was supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $949,000 with 100 percent funded by CDC/HHS. The contents are those of the authors and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.