Handling Sensitive Research Data

Researchers working with sensitive data face a unique challenge when deciding to deposit and share their data. Preparing sensitive data for future sharing begins before the first participant is recruited. Considerations related to ethics approval, deposit friendly informed consent language, data management planning, selecting repositories with appropriate access controls, and data access governance all have implications for research security, participant privacy, and policy compliance.

This session explores practical approaches to managing sensitive research data from project planning through data sharing and preservation. Using case studies, we'll examine key considerations at different stages of the research data lifecycle and how decisions made early in a project can enable the safe, secure, and responsible sharing of sensitive data after data collection.

In the session we’ll explore practical tools and resources that support best practices for preparing sensitive data for deposit, in order to support secure and sustainable data sharing practices throughout the research lifecycle.

About the Speaker
Lucy Shen is the Data Governance and Ethics Lead at the Digital Research Alliance of Canada (DRAC). In this role, she leads the Controlled Access Management (CAM) Initiative, a community forum that brings together stakeholders to advance the controlled access management of sensitive research data. She also supports the Sensitive Data Expert Group, one of the DRAC's Networks of Expert Groups, in developing resources that promote best practices for working with sensitive research data.

Lucy has a background in clinical research and research integrity and is passionate about supporting open science through responsible research data management.

This event is organized by the Digital Research Alliance of Canada.