Consent to Share Data: Supporting Responsible Data Sharing in Connecticut
Data sharing can help Connecticut agencies better understand how programs are working, coordinate services, evaluate outcomes, and make more informed policy decisions. At the same time, sharing information about individuals requires appropriate safeguards to protect privacy and ensure that people understand how their information may be used. Informed consent is an important part of balancing these goals by giving individuals greater control over what information is shared, with whom, and for what purposes.
The Consent to Share Data: A Review of Practices for Research and Service Delivery from DataLinkCT Agencies report examines how agencies participating in DataLinkCT approach consent and the sharing of protected information for research and service delivery. DataLinkCT, formerly known as P20 WIN, is Connecticut's longitudinal data system used to securely match information across state agencies for research and policy purposes.
What the Report Examines
The report provides an overview of:
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Current consent and data-sharing practices among participating DataLinkCT agencies;
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The different legal, regulatory, and operational considerations that affect when and how information may be shared;
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Approaches used by agencies to protect personally identifiable, health, educational, and other sensitive information;
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Promising consent-management initiatives underway in Colorado, Washington, Virginia, Michigan, and California; and
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Opportunities for Connecticut to make consent processes clearer, more consistent, and easier for residents and agencies to navigate.
Opportunities for Connecticut
The report recognizes that modernizing consent across government is a complex undertaking that requires collaboration, investment, and careful consideration of federal and state privacy requirements. It also identifies practical steps that agencies can begin pursuing now.
Among the recommendations are improving privacy notices so residents can more easily understand how their information may be used for research; exploring a standardized consent form that could be used across health and human service programs; providing individuals with more specific choices about the information they authorize for sharing; and exploring an online consent-management platform that could allow authorized agencies to securely track, update, and manage consent over time.
These approaches could help reduce duplicative paperwork, improve coordination among agencies and service providers, strengthen transparency, and provide individuals with greater control over their information while supporting responsible uses of data for research, evaluation, and improved public services.
To learn more about Connecticut's current consent practices, examples from other jurisdictions, and the report's recommendations, read the full Consent to Share Data report [HERE].