Video Series: Participant Data
Participating in a research study can require sharing personal, sensitive, and often confidential information. This series of short videos is designed to help prospective research participants learn about what happens when they share their data for research, including why this is important and the robust systems in place to protect their personal information.
The videos were developed by the Emerging Technologies, Ethics, and Research Data Subcommittee of our Regulatory Foundations, Ethics, and Law program. If you have any questions, comments, or concerns, please email Regulatory@catalyst.harvard.edu.
Introduction
In this introductory video, Barbara Bierer, faculty lead for our Regulatory Foundations, Ethics, and Law program, provides an introduction on participant data.
What is Human Subjects Research?
First, it’s important to define human subjects research and learn how it differs from other research activities. Aaron Kirby, director of our Regulatory Foundations, Ethics, and Law program, leads this discussion.
What is Research Data?
Research data is generated in different formats and can be collected in a variety of ways. In this video, Elizabeth Parsons, IRB administrator for the Harvard University Area IRB, clarifies what research data is and what it is not. Parsons also discusses how study teams may collect your information.
Why Should I Share My Research Data?
Sharing your research data can help improve the health and wellbeing of other people in the future, but deciding whether to share your private and confidential information is a personal decision. In this video, Kim Serpico, associate director of operations for the Harvard T.H. Chan School of Public Health, Harvard Medical School, and the Harvard School of Dental Medicine, discusses why sharing research data is important. Serpico also identifies issues to consider when deciding whether to share your information with other researchers.
How is my Research Data Protected?
When sharing any type of information, it is essential to understand how your information will be protected. In this video, Joe Zurba, director of research security and regulatory compliance at Harvard Medical School, explains the many steps that take place before, during, and after a study to protect your information.
Who has Access to my Data and Where is it Stored?
A research study involves a variety of study team members, including people you may never meet. This can make it difficult to understand who will have access to your information and where it will be stored, physically or virtually. In this video, Evan Sohn, regulatory affairs officer for our Regulatory Foundations, Ethics, and Law program, provides a general overview of what information members of the study team can access and the processes in place to store research data.