Medical Information Commons to Support Learning Healthcare Systems: Examples From Canada.

Authors:
Tania Bubela
Tania Bubela
University of Alberta
Canada
Shelagh K Genuis
Shelagh K Genuis
School of Public Health
Birmingham | United States
Naveed Z Janjua
Naveed Z Janjua
Aga Khan University
Kampala | Uganda
Mel Krajden
Mel Krajden
University of British Columbia
Vancouver | Canada
Nicole Mittmann
Nicole Mittmann
University of Toronto
Canada
Katerina Podolak
Katerina Podolak
University of Sydney) and law (Gold medalist
Lawrence W Svenson
Lawrence W Svenson
Alberta Health
Director, Epidemiology & Surveillance
Edmonton, Alberta | Canada

J Law Med Ethics 2019 Mar;47(1):97-105

Tania Bubela, Ph.D., J.D., F.C.A.H.S., is an expert in health and intellectual property law and policy, combining her training in genetics (Ph.D. Biology, University of Sydney) and law (Gold medalist, University of Alberta). She is the Dean of Faculty of Health Sciences at Simon Fraser University (Burnaby, British Columbia), developing sector-leading policies, processes, practices, and infrastructure to support excellence in interdisciplinary education, research, and engagement that will improve health, health equity, and well-being. Shelagh K. Genuis, Ph.D., is the project manager for the Genome Canada's Precision Medicine Policy Network, based in the Faculty of Medicine and Dentistry at the University of Alberta, Alberta. Naveed Z. Janjua, M.D., Ph.D., is a Senior Scientist at the BC Centre for Disease Control and Clinical Associate Professor at School of Population and Public Health, University of British Columbia. Mel Krajden, M.D., F.R.C.P.C., is the Director of BC's Public Health Laboratory and the Medical Head, Hepatitis at the British Columbia Centre for Disease Control. He is also a Professor of Pathology and Laboratory Medicine at the University of British Columbia. He has extensive clinical trials expertise and is a Co-investigator/Mentor on the CIHR funded National Research Training Program (CanHepC). Nicole Mittmann, Ph.D., is the Chief Research Officer at CCO. She is an Assistant Professor at the University of Toronto in the Department of Pharmacology and Toxicology and an Associate Scientist at Sunnybrook Health Sciences Centre. Katerina Podolak is the Group Manager for Data Acquisition and Disclosure at Cancer Care Ontario, working with data partners to bring data into CCO, and health system partners who want access to CCO data. Katerina has extensive experience with information management in the hospital setting, as well as Ontario's Ministry of Health and Long-term Care. Larry Svenson, Ph.D., F.R.S.P.H., is the Provincial Health Analytics Officer and Executive Director for Analytics and Performance Reporting at Alberta Health. He is also an Associate Professor with the Division of Preventive Medicine at the University of Alberta and an Adjunct Professor with the School of Public Health at the University of Alberta and the Cumming School of Medicine at the University of Calgary.

We explore how principles predicting the success of a medical information commons (MIC) advantaged or disadvantaged three MIC initiatives in three Canadian provinces. Our MIC case examples demonstrate that practices and policies to promote access to and use of health information can help improve individual healthcare and inform a learning health system. MICs were constrained by heterogenous health information protection laws across jurisdictions and risk-averse institutional cultures. A networked approach to MICs would unlock even more potential for national and international data collaborations to improve health and healthcare.

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http://dx.doi.org/10.1177/1073110519840488DOI Listing
March 2019
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