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Privacy & security

Ontario Brain Institute becomes privacy ambassador

TORONTO – In under two years, the Ontario Brain Institute (OBI) has moved from being an idea on paper to a world-leading virtual brain research institute that values the importance of privacy protection. OBI has now been designated by the Office of the Information and Privacy Commissioner of Ontario (IPC) as one of only eight “Privacy Ambassadors” in the world.

OBI joins the ranks of organizations and companies across North America recognized for their excellence in embedding the idea of Privacy By Design into all their operations.

Dr. Ann Cavoukian (pictured), the Information and Privacy Commissioner of Ontario, applauded OBI for recognizing the need for improved data analytics in neuroscience and for taking a Privacy by Design approach in developing its extensive brain research platform. She said: “The protection of personal health information is unquestionably important. By collecting data only with express consent and disclosing it in a de-identified format, researchers will have the tools they need to better understand brain diseases and disorders, while individuals can have confidence their health information remains strongly protected.”

Dr. Donald Stuss, President and CEO of the Ontario Brain Institute, noted: “The importance of patient privacy grows as the size and frequency of clinical trials and other studies involving patients continues to grow in Ontario. Part of our responsibility is to ensure the organizations we fund and partner with are aware of the profound obligation we all have to maintaining secure records that protect patient information.”

What is “Privacy by Design?”
Ontario’s Information and Privacy Commissioner Dr. Ann Cavoukian developed Privacy by Design (PbD), which was unanimously approved as an international framework for privacy protection in 2010. The PbD framework seeks to embed privacy into the design specifications of information technologies, organizational practices and networked system architectures, to achieve the strongest protection possible, as the default condition. The objectives of Privacy by Design can be accomplished by practicing the 7 Foundational Principles:

1. Proactive not Reactive; Preventative not Remedial

2. Privacy as the Default Setting

3. Privacy Embedded into Design

4. Full Functionality – Positive-Sum, not Zero-Sum

5. End-to-End Security – Full Lifecycle Protection

6. Visibility and Transparency – Keep it Open

7. Respect for User Privacy – Keep it User-centric

What is a “PbD Ambassador?”
The Information and Privacy Commissioner of Ontario recognizes individuals and organizations committed to ensuring the ongoing protection of personal information by following the 7 Foundational Principles of Privacy by Design. Organizational Ambassadors demonstrate leadership and expertise in implementing Privacy by Design at a level that goes beyond the status quo in protecting privacy. These organizations consider the protection of personal information as a critical business requirement and as an opportunity to build trust with their stakeholders. To date, only eight organizations in the world have received the “PbD Ambassador” designation, each of which is profiled on the Privacy Commissioner’s website.

What is the benefit to OBI?
Becoming a “PbD Ambassador” demonstrates OBI’s commitment to being a leader in the protection of privacy. By adopting the principles of PbD, the OBI is committed to building the trust of key stakeholders, such as research ethics boards, and research participants whose information will be made available to a wide range of researcher through the research platform that is currently being developed by OBI. This research platform will contain an unprecedented amount of information on a range of brain conditions.

About the Ontario Brain Institute
Launched in November 2010, the OBI has been established to become an internationally recognized centre of excellence in brain research, translation and innovation. It will achieve its vision by initiating, funding, promoting and stimulating brain research, education and training. The research outcomes will be translated into clinical applications and commercialization opportunities related to the prevention, early diagnosis, treatment and management of brain diseases and disorders. The Institute is an independent, not-for-profit corporation funded by the Government of Ontario. The OBI will serve as a nexus for collaborative efforts, with a program focused on bringing together Ontario’s leading scientists and clinicians drawn from Ontario’s universities, colleges, and hospitals. For more information about the OBI, visit

About the IPC
The Information and Privacy Commissioner is appointed by, and reports to, the Ontario Legislative Assembly, and is independent of the government of the day. The Commissioner’s mandate includes overseeing the access and privacy provisions of the Freedom of Information and Protection of Privacy Act and the Municipal Freedom of Information and Protection of Privacy Act, as well as the Personal Health Information Protection Act, which applies to both public and private sector health information custodians. The Commissioner’s mandate also includes helping to educate the public about access and privacy issues. For more information about IPC, visit

Posted November 1, 2012