2020 - 2025
Project Overview:
This project is 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.
To date, 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.
- Case Study Report that discusses how Iowa’s Integrated Data System for Decision-Making (I2D2) shares human services, education, and health data across programs to conduct data analyses that inform policy, support program decision-making, and improve outcomes for Iowa’s children and families. It includes several lessons learned and recommendations from the people who developed and operate I2D2. It also includes copies of legal agreements used to facilitate some of the data sharing activities.
- Case Study Report that discusses how Montgomery County, Maryland’s Department of Health & Human Services (DHHS) enterprise integrated case management system (eICM) shares data across more than 70 DHHS programs. Goals of data sharing include allowing staff to better understand their clients, more efficiently serve them, and improve their outcomes. It includes several lessons learned and recommendations from the people who developed and operate the eICM. It also includes a full and abridged copy of DHHS’ Notice of Privacy Protections (NoPP), which helps to facilitate some of the data sharing activities.
- Case Study Report that discusses how the Kentucky Health Information Data Sharing (KHIDS) interface provides child welfare workers efficient access to HIPAA protected healthcare data about the foster children they serve. It includes a discussion of the system, the relevant laws, and the controls put in place to assure the records are accessed appropriately. It includes several lessons learned and recommendations from the people who developed and operate the interface. It also includes a copy of the Memorandum of Understanding and Business Associate Agreement that the parties signed to document their data sharing responsibilities.
The project team is 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 point of contact is Josh Williams.