On September 24-25, 2013, the Privacy Tools for Sharing Research Data project at Harvard University held a workshop titled "Integrating Approaches to Privacy across the Research Data Lifecycle." Over forty leading experts in computer science, statistics, law, policy, and social science research convened to discuss the state of the art in data privacy research. The resulting conversations centered on the emerging tools and approaches from the participants’ various disciplines and how they should be integrated in the context of real-world use cases that involve the management of confidential research data.
This workshop report, the first in a series, provides an overview of the long-term longitudinal study use case. Long-term longitudinal studies collect, at multiple points over a long period of time, highly-specific and often sensitive data describing the health, socioeconomic, or behavioral characteristics of human subjects. The value of such studies lies in part in their ability to link a set of behaviors and changes to each individual, but these factors tend to make the combination of observable characteristics associated with each subject unique and potentially identifiable.