Public Talk: Personal Health Data Sharing for Personalized Medicine

On December 2, 2015, six leaders came together for conversations about types of personal health data, opportunities that arise from integrating these data for health and economic benefits, and issues in secure, private and ethical storage and sharing of these data.

Dr. Jehannine Austin – Associate Professor, UBC Psychiatry/Medical Genetics

Dr. Jehannine Austin is an associate professor in the Departments of Psychiatry and Medical Genetics at UBC and holds the Canada Research Chair in Translational Psychiatric Genomics. She is president-elect of the National Society of Genetic Counselors and graduate advisor to the Genetic Counseling Program at the University of British Columbia.

Discussion Topics and Panelists (please view video above):

The Facts about Personal Health Data

Panelists (discussion starts at 14:36 in the video):
Dr. Elodie Portales-Casamar, Clinical Research Informatics Lead, Child & Family Research Institute

Dr. Elodie Portales-Casamar is the Clinical Research Informatics Lead at the Child and Family Research Institute, BC Children’s & Women’s Hospital. In this role, she helps researchers access, collect, manage, integrate, and analyze data necessary for their clinical studies, with the goal to facilitate the translation of research into improved clinical practices

Nancy Meagher, Executive Director, Population Data BC

Nancy Meagher is the Executive Director of Population Data BC (PopData). With a Master’s in Economics, Meagher has worked internationally in health policy research, hospital management, and pharmaceutical market research, bridging research and its application in policy, business and industry. Over the past ten years Meagher, working with staff and key stakeholders, has developed PopData into a multi-university data and education resource offering researchers access to one of the world’s largest collections of health care, health services and population health data.

Q & A included:
What kind of data are we talking about and who would want access and for what reason?
How does Population Data BC ( fit into this environment?
What is different about genomics data?
What are some of the initiatives on the horizon that might be helping researcher data access?

Advantages, Opportunities & Applications of Sharing Personal Health Data:

Panelists (discussion starts at 39:45 in the video):

Dr. Larry Lynd, Professor, UBC Faculty of Pharmaceutical Sciences

Dr. Larry Lynd was a practicing pharmacist in his last life, but is now a Professor of epidemiology and health economics, and the Director of the Collaboration for Outcomes Research and Evaluation in the Faculty of Pharmaceutical Sciences at UBC, and a Scientist at the Centre for Health Outcomes and Evaluation Sciences at Providence Health Care.

Dr. Zsuzsanna Hollander, Biomarker Program Manager, PROOF Centre

Dr. Zsuzsanna Hollander is the Biomarker Program Manager for the PROOF Centre. PROOF stands for “Prevention of Organ Failure”. She is managing a large-scale Genome Canada-funded program in the area of chronic obstructive pulmonary disease (COPD). Hollander obtained her Master of Science degree in Computer Science followed by a PhD in Pathology and Laboratory Medicine at UBC.

Q & A included:
What are some of the practical uses of these data, and how might they benefit me, as a tax paying British Columbian?
How does the PROOF Centre ( use data to improve patient care?
As a patient, what are the advantages of participating in a research study?

Best Practices in Personal Health Data Sharing – Securely and Ethically:

Panelists (discussion starts at 1:00:42 in the video):

Dr. Paul Terry, President & CEO, PHEMI Systems Inc.

Dr. Paul Terry is the President and CEO at PHEMI Systems, a big data solution provider. He currently serves on the board of directors for Providence Health Care, advising on its subcommittees for innovation, quality, EMR and next-generation data strategies. Terry is also on the board of directors for Life Sciences BC and Molecular You, and is an advisor to the BC provincial government on next-generation data strategies. Terry is an adjunct professor in Big Data at Simon Fraser University and is an ambassador for Privacy By Design.

Dr. Alice Virani, Clinical Ethicist, Children’s and Women’s Hospital of BC

Dr. Alice Virani is the Lead of the Clinical Ethics at PHSA and in her role oversees ethics at a number of agencies including the BC Children’s Hospital, BC Women’s Hospital, the BC Cancer Agency and the Centre for Disease Control. Virani is a genetic counselor by training and is passionate about ensuring genetic technologies are integrated into healthcare in a thoughtful and ethically responsible manner.

Q & A included:
How is technology, cloud, big data, analytics, visualization impacting the future of medicine?
Ethicists say that “your liberty to swing your fists ends just where my nose begins”. This makes sense in day-to-day life, but how can you apply principles of personal freedom of choice, and ‘do no harm’ to a topic like personalized medicine and health data sharing?

Discussion Document: Roadmap for Bringing Personalized Medicine to British Columbians available for download here {PDF} for those interested.

In the Media: Vancouver company Phemi’s software promises to keep private data secure


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