As a way to illustrate Research Data Management (RDM) in practice, this session will feature a panel of those who support researchers working with sensitive data, with a particular focus on clinical data. The session will contain a series of guided questions for the panel, lead by a moderator, to illustrate multiple perspectives of how to best work with sensitive data to avoid unanticipated headaches and pitfalls. Audience questions will be encouraged throughout, so please bring questions if you have any!

Moderator

Elizabeth Kinney is the Manager of the Research Specialist Team for ARC. She has a Juris Doctor from the University of Victoria, BC, and a Master in Law from the University of British Columbia. With over 14 years of experience in clinical research and health research administration in both Canada and the United States, she has firsthand experience with telemedicine and health technology. Elizabeth came to ARC because of her passion for training researchers and supporting innovation through high-performance computing. She has experience sitting on the UBC Research Ethics Board and BCNET committees.

Panelists

Laurel Evans is the Director of the Office of Research Ethics at the University of British Columbia where she has worked since 2007.  Laurel oversees the operations of the human research protections program of the University and its affiliated hospitals. (Currently six REBs.) Her prior experience includes three years at McMaster University in a combined role of Sr. Ethics Advisor and Legal Counsel – Clinical Trials, and almost two years with St. Michael’s Hospital where she had responsibility for contract review and special projects.  Laurel was the legal representative on the Ontario Cancer Research Ethics Board and an adjunct professor at McMaster where she taught health law, policy and ethics in the Health Studies and Health Sciences programs. She is a past President of the Canadian Association of Research Ethics Boards. Laurel was the initial lead contact for the BC Ethics Harmonization Initiative when the grant was first funded by the Michael Smith Foundation for Health Research. Her office led the development of the Provincial Research Ethics Board Platform, creating a separate work-space for multi-jurisdictional reviews in British Columbia, leveraging off of UBC’s online system.

Dr. Phillip Richmond earned his PhD in Bioinformatics from UBC within Dr. Wyeth Wasserman’s Medical Genetics laboratory at the BC Children’s Hospital Research Institute (2015-2020). His expertise focuses on whole genome sequencing in the diagnosis of rare genetic disorders, with experience in multi-omics, novel gene discovery, and bioinformatic tool development. He has implemented and managed compute servers at BCCHR in collaboration with the BCCHR IT team, and worked on multiple projects involving clinically-derived sensitive research data. He has also been engaged in educational activities including developing and teaching workshops at Genome BC, BCCHR, UBC ARC, and Compute Canada. He now has a role as staff scientist within the new Precision Health Initiative at BC Children’s Hospital Research Institute. His current work focuses on high performance computing infrastructure solutions for researchers, training and education in genome analysis, and precision health data analysis for unsolved rare genetic disease cases at BC Children’s Hospital.

Susan Johnson is the Manager of Privacy and Information Security Management (PrISM) within Safety and Risk Services. In this role, she manages the team that conducts privacy and information security risk assessments on UBC projects and initiatives that handle Personal Information (PI). This includes the Privacy Impact Assessments required by FIPPA, BC’s public sector privacy legislation. PrISM SRS also provides advisory services on privacy and information security to individuals and teams across UBC, working closely with the Chief Information Security Officer, the University Counsel for Privacy, Enterprise Data Governance and Records Management. Susan is passionate about privacy and information security and has been working and consulting in this field since 2003.

Jim Mintha is the Systems and Security Manager at Population Data BC. He has worked for more than 30 years in the field of systems administration specialising in security.  Prior to working at Population Data BC, he worked for seven years as the senior systems analyst for the central IT department at the University of Amsterdam in The Netherlands.  Jim is also an active supporter of open source software and local pizza establishments.

This workshop is part of the RDM Fall Series 2021.

Location Details

Location:

*ONLINE*

If you have any questions, concerns, or accessibility needs please email doug.brigham@ubc.ca.

To keep up-to-date with all of the workshops, consults, and events subscribe to the UBC Library Research Commons monthly newsletter.