Personal Health Information and Sensitive Data: Practical Examples of Storage, Security, Data Sharing, and Beyond
Managing health research data is a daunting task. It seems like it requires you to become a lawyer to understand the ethics, privacy, and legal requirements, become an IT professional to assess technical systems and security, and all of that on top of being a scientist and managing your research. How do you know when you’re working with Personal Health Information or just health research data? Should you store data at the university or the hospital? In this session we will discuss practical examples and workflows for storing, managing, and sharing health sciences research data. We’ll talk about data storage, data sharing in a team and managing access, data sharing and deposit to support long-term retention, and more! We’ll discuss how to assess personal health data, how to de-identify it, and how to know whether something is anonymous or just coded. If you’re looking to start a new research project with personal health information, or information on best practices for health sciences research, this session is for you.
By the end of this session, participants will be able to:
- Identify the risk level of a data set
- Determine the identifiability of a data set
- Understand the options available at McMaster for managing personal health information
- Locate resources and support for managing personal health information
Workshop Preparation
None
Facilitator Bio
Danica Evering is a Research Data Management Specialist grounded in curiosity and a deep commitment to ethics. Danica is available to help students, postdocs, faculty, and staff with RDM through the data lifecycle—Data Management Plans, storage and backup, data security, data sharing. With an MA in Media Studies, Danica fosters active interest in RDM across disciplines, with a knack for engaging researchers who might not even realize they have data to manage. Outside of work they sing in a choir, play PC games, maintain an art writing practice, grow a garden, contribute Wikipedia articles, and run.
Isaac Pratt (he/him) is a research scientist by training and has a PhD in Anatomy & Cell Biology. He leverages nearly a decade of interdisciplinary research experience to help support students, staff, and faculty. His expertise lies in questions surrounding data storage, security, planning, archival, and sharing. Isaac also provides support and curation services for McMaster Dataverse. His other interests include reproducible research methods, open science, and data science.
Workshop Slides
Coming soon.