Understanding how to identify and manage personal identifying information (PII) to further data interoperability

Abstract

Respect for research participant rights is a key aspect for consideration when creating and utilizing interoperable data. From that perspective, requirements for sharing research data often call for the data to be de-identified, i.e., the removal of all personal identifying information (PII) prior to data sharing, to ensure that the participant’s data privacy rights are not infringed upon. However, what constitutes PII is often a point of confusion amongst researchers who are not familiar with privacy laws and regulations. This paper hopes to provide some clarity around what makes research data identifiable by presenting it under a different perspective from what most researchers are familiar with. It also provides a framework to help researchers determine where PII could exist within their data that they can use to help with privacy impact evaluations. The goal is to empower researchers to share their data with greater confidence that the privacy rights of their research subjects have been sufficiently protected, enabling access to greater amounts of data for research use.