De-identification is an Important Tool to Make Data Available to Communities.

Generally, once public health removes or obscures personal identifying information within a data set, law does not constrain the use or disclosure of the remaining data. De-identification enables public health to collect and share data without violating individuals’ privacy or law.

Public health has evolved to an expanded scope of practice, called Public Health 3.0, which recognizes that “[p]ublic health is what we do together as a society to ensure the conditions in which everyone can be healthy.” Today, communities partner with public health and others to address important issues, often focusing on environmental and social determinants of health, with the goal of achieving health equity. A modern information infrastructure, built with health and non-health data that are locally relevant, is critical to both public health and its community partners. To help support this infrastructure, public health should more widely use de-identification to make more timely, reliable, sub-county and actionable data available. Understanding the benefits of utilizing de-identified data and the mechanics of disclosing it are critical to improve health equity. The De-Identification Toolkit is intended for a broad audience of health officials, community organizations, privacy officers, public health practitioners, data managers and their attorneys.

De-identification Toolkit

The De-identification Toolkit provides multiple tools and resources to address legal and practical considerations in using and sharing de-identified data and is intended for a broad audience of health officials, privacy officers, public health practitioners, data managers and their attorneys.  

Data Sharing Makes a Difference

  • Project Tycho:  Project Tycho illustrates the power of the use of de-identified data to quantify the impact that vaccine licensure has on the spread of disease.
  • Live Better Mobile:  Mobile, Alabama, a Robert Wood Johnson Foundation Culture of Health Sentinel Community, effectively uses de-identified multi-sectoral data to improve health and well-being. 
  • Memphis Community Health Record Project: The Community Health Record is a framework and tool for the community to simultaneously use, aggregate and integrate data and information. Importantly, this project’s leadership understood that privacy is a balance and that collaboration is essential for data sharing.