The Data Effect Declaration

We, the undersigned, believe that British Columbia should elevate the use of data to drive world-class research and innovation to a public policy priority. The Province — and Canada — is uniquely positioned to become a global centre for excellence in the use of data to drive public and individual health innovation. This is because of the unique combination of professional talent and more than 40 years of collecting broad sets of health, population and economic data. Advancing this unique opportunity should be a high priority, as it will contribute to inform smart investments in health and thus contribute to the excellence and sustainability of our health care system.

As illustrated by a Mustel Group poll released in association with The Data Effect Summit on December 5, 2013, the vast majority of British Columbians expect action to be taken in leveraging this data resource to catalyze research and economic development. They also welcome the use of their personal health data for research, provided that proper privacy controls are in place to ensure that all data is properly anonymized.

We believe that the following principles should be part of an effective use of British Columbia’s public data resource:

British Columbia must move quickly to capitalize on our unique data assets. Other jurisdictions are investing significant resources in data management to drive health care innovation and economic growth. We must not be left behind.
British Columbia’s — and Canada’s — data repositories are a valuable and unique public asset that can be use for the public good to improve public health and foster economic growth.
We have a duty to use British Columbia’s unique healthcare data assets in the public interest.
Using this healthcare data, British Columbia and Canada can be an international centre for excellence in research into health care and other areas. Such has been proven by British Columbia’s groundbreaking work in HIV-AIDS, cancer research, research into adverse drug reactions, spinal cord research, cardiovascular and pulmonary research, advanced studies in genomics and genetics, and other areas.
The protection of individual privacy is paramount. But to maximize the benefit of public healthcare and demographic data, researchers must be allowed timely and streamlined access to data sets.
British Columbia’s diverse array of data sets should be better integrated to ease administration and research.

We welcome the statements of British Columbia Health Minister Terry Lake and Innovation Minister Andrew Wilkinson at the 2013 Data Effect Summit aimed at making innovation in healthcare data research a focus of the government’s agenda. We commit to working with the government and all others to make this happen for the benefit of all British Columbians.

Submitted with enthusiasm and respect July 25, 2014

Dr. Julio Montaner,
Director, B.C. Centre for Excellence in HIV/AIDS

Don Avison
Former President of the Research University Council of British Columbia

Colin Hansen,
Former BC Health and Finance Minister

Dr. Alan Rabinowitz,
Co-Founder and Chief Medical Officer, PHEMI Health Care Systems –

Bruce McManus sig.jpg
Dr. Bruce McManus,
CEO, PROOF Center of Excellence

Dr. Brad Popovich
Chief Scientific Officer
Genome British Columbia

Dr. Bruce Carleton
Professor and Co-Chair, Division of Translational Therapeutics Director, Pharmaceutical Outcomes Programme, BC Children’s Hospital Senior Clinician Scientist, Child and Family Research Institute

Dr. Ryan D’Arcy
Professor and BC Leadership Chair, Head, Medical Technologies, Faculty of Applied Sciences, Simon Fraser University Head, Health Sciences and Innovation, Surrey Memorial Hospital, Fraser Health Authority

Paul Drohan
President and CEO
Life Sciences BC

Karimah Es Sabar
President and CEO
The Centre for Drug Research and Development

Paul Terry
President & CEO
PHEMI Health Systems

Diane Finegood
President & CEO
Michael Smith Foundation for Health Research

Nancy Meagher
Executive Director
Population Data BC

Greg D’Avignon
President and CEO
Business Council of British Columbia

The Data Effect Declaration