Responsibly Sharing Confidential Data: Tools and Recommendations

2020 - 2025

Project Overview:

This project focused on developing guidance on how to navigate the privacy and security challenges that arise when trying to share data to enhance services that promote the well-being of children and families.

Individuals often receive human services and other assistance from several independent programs. Providing a case worker data from multiple programs can improve their understanding of a recipient and how to better serve them. Providing a researcher data from multiple programs can improve their understanding of the overall system and how to improve services for all recipients. However, sharing data between offices and agencies often raises legitimate concerns, such as whether it (a) complies with applicable law, (b) meets individuals’ privacy expectations, and (c) creates a security risk. This project examines how organizations can share data to benefit recipients, and how to responsibly navigate and mitigate the concerns that might arise when sharing that data.

This project has developed:

  • A Confidentiality Toolkit that discusses why and how to share different categories of human services data, highlights how information technology can assist, and includes sample documents used in data sharing initiatives.
  • A series of Case Study Reports that provide examples and learnings that states and localities can leverage to create or improve initiatives to responsibly share data across programs to enhance services that promote the well-being of children and families. Some of the case studies provide additional materials, such as model memorandums of understanding and data sharing agreements that could be used by similar organizations as a starting point for creating such documents.

This project includes a detailed cross-site review and findings synthesis (PDF) of all eleven case studies conducted.

Explore the eleven individuals case studies:

Data sharing initiative location

Description

Camden, NJ (PDF)

The Camden Administrative Records Integration for Service Excellence (Camden ARISE) is a data warehouse operated by the Camden Coalition, a community-based nonprofit working to improve care for people with complex health and social needs in the city of Camden, across New Jersey, and around the country. Among the data sharing initiatives featured, Camden ARISE is noteworthy for being operated by a nonprofit agency and for its use of a Community Advisory Council to build support for its work in the community.

Connecticut (PDF)

The Preschool through 20 and Workforce Information Network, or P20 WIN (now called DataLinkCT), is Connecticut’s state longitudinal data system.  Among the data sharing initiatives, P20 WIN is noteworthy as a state longitudinal data system with federated (i.e., decentralized) data sharing across multiple sectors. While nearly every state has a longitudinal education and workforce data system, P20 WIN also includes data from the health, human services, and criminal justice sectors.

Iowa (PDF)

Iowa’s Integrated Data System for Decision-Making (I2D2) facilitates the sharing of human services, education, and health data across programs in order to conduct data analyses that inform policy, support program decision-making, and improve outcomes for Iowa’s children and families. I2D2 was developed with the support and guidance of Early Childhood Iowa, a statewide initiative that focuses on young children in Iowa. I2D2 was selected as a case study site because of its sophisticated data security policies and procedures and its detailed governance plan.

Kentucky (PDF)

The Kentucky Health Information Data Sharing (KHIDS) Project provided child welfare workers with easier access to healthcare records of the foster children they serve. This was done via an interface that connected two information systems managed by two different parts of the Kentucky Cabinet for Health and Family Services. The resulting data share will improve the health and well-being of foster children in Kentucky and increase the efficiency with which child welfare workers can do their work. The KHIDS Project was selected for a case study because of its focus on child welfare—a priority topic area for ACF. It also provides an important example of how an organization’s chief privacy officer can influence the design and implementation of a data sharing initiative.

King County, WA (PDF)

King County, Washington has developed the ’integrated data hub’ (IDH), a data sharing initiative that identifies and connects records belonging to unique clients across data sources. The IDH is a joint venture between the King County Department of Community and Human Services and Public Health—Seattle & King County with support from the Department of Information Technology. Among the data sharing initiatives featured, the IDH is noteworthy for its federated model which allows data owners to maintain a high level of control over how their data is used. A centralized team conducts the identity-matching on records from participating data sources, but pooled data are not stored in a warehouse

Massachusetts (PDF)

The Massachusetts Public Health Data Warehouse (PHD) links individual-level administrative data from statewide and local sources. This data linkage supports actionable public health analyses, particularly around opioid overdose prevention. The PHD was developed and is operated by the Data Science, Research, and Epidemiology Division of the Massachusetts Department of Public Health. Among the data sharing initiatives featured, the PHD is noteworthy for its flexible and collaborative approach to working with data providers and its emphasis on conducting public health analyses that facilitate “data-to-action.” 

Minnesota (PDF)

The Minnesota Early Childhood Longitudinal Data System (ECLDS) collects and maintains data related to early childhood from birth to third grade. It links these data across entities and over time to provide data users with a comprehensive picture of early childhood in Minnesota. This case study is intended for state agency leadership and program officials who want to implement a new data sharing initiative or improve or expand an existing initiative, particularly for those interested in initiatives related to early childhood.

Montgomery County, MD (PDF)

This case study of Montgomery County, Maryland’s Department of Health & Human Services (DHHS) enterprise integrated case management system (eICM). The eICM is an operational data warehouse that shares data across more than 70 DHHS programs. It provides staff with more complete real-time and historical information about each client and the variety of services they requested or received than staff previously had access to, allowing staff to better understand their clients, more efficiently serve them, and improve their outcomes.

Rhode Island (PDF)

The Rhode Island Ecosystem, managed by the Executive Office of Health and Human Services, integrates individual-level data from multiple sources that can be analyzed to provide operational solutions. It began as an internal state resource to support Medicaid and is now a valuable asset for program managers, service providers, health insurers, and researchers. This case study provides examples of how to address confidentiality and privacy issues in a system that includes data from many programs across the human services, health, education, criminal justice, labor and training, and housing sectors.

San Diego, CA (PDF)

San Diego’s 211 system and Community Information Exchange (211/CIE San Diego), offers a technology platform that supports service provision. 211/CIE San Diego is referred to as an ecosystem because it is a dynamic infrastructure that is shaped by ever changing policy, use-cases, data, participating parties and iterative community needs. Among the data sharing initiatives featured, the 211/CIE San Diego is noteworthy for providing an infrastructure that allows information about an individual’s circumstances and the services they receive to be shared efficiently and responsibly by the system’s partnering organizations to facilitate care coordination.

Virginia (PDF)

The Virginia Commonwealth Data Trust offers a centralized cloud-based infrastructure for data sharing among state agencies as well as a data governance framework to address data privacy and security.  Among the data sharing initiatives featured, the Data Trust is noteworthy for using unique entity IDs to pool linked de-identified data, formalizing member agency vs. public levels of data access, and earning income through storage and service fees.

Note: While we think the stories and advice found in these case studies are broadly applicable, we note that each organization is different; this includes their origin, their structure, their services, their environment, and the specific requirements that govern their activities. Anyone working to share data should plan to work with their key stakeholders to make sure the result best fits their needs and expectations.

The contract project team was led by Westat in partnership with the Inter-university Consortium for Political and Social Research (ICPSR) and the Future of Privacy Forum (FPF).

The OPRE points of contact are Crystal Moore and Joshua Williams.

Related Resources

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Confidentiality Toolkit

November 4, 2021
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This toolkit discusses how to responsibly share personally identifiable information collected by human services and related programs to enhance service delivery and research efforts.