Privacy Best Practices (PBPs)

2005-2007 Initial Implementation Phase

In response to the need for Privacy Best Practices voiced by the broad research community, the CIHR Ethics Office established a multi-sectoral Privacy Advisory Committee (PAC) in 2003 to assist in developing a draft set of Best Practices and consulted on this draft document widely in 2004. The current Privacy Best Practices (September 2005) have been revised in light of feedback received during these consultations.

The Privacy Best Practices are intended to:

• provide guidance for health researchers in the design and conduct of health research involving personal information;
• be a resource for research ethics boards and institutions to consult when reviewing and evaluating health research involving personal information; and 
• through the uptake and application of these Best Practices in the development of privacy laws or policies across Canada, contribute toward a more coherent and harmonized framework for addressing privacy and confidentiality issues in health research.  

Initial Implementation Phase

Responding to comments during the consultations and PAC recommendations, the CIHR Ethics Office has established an Initial Implementation Working Group (IIWG) to shepherd the document through the first two years of implementation. IIWG members include the National Council on Ethics in Human Research, the Canadian Association of Research Ethics Boards and the Secretariat on Research Ethics.

During this phase:

• the IIWG will engage key target users of the document to provide feedback with respect to the use, usefulness and impact of the Privacy Best Practices;
• the document will be evaluated, not the users;
• compliance with the Privacy Best Practices is voluntary; and
• at the end of the two years, the IIWG will make recommendations regarding improvements to the Privacy Best Practices, and a longer term implementation strategy.

Conceptual Framework and Evaluation Tools

A conceptual framework for the implementation phase of the Privacy Best Practices (PBPs) document and the evaluation of its use, usefulness, and impact over the next two years has been developed.

Initial Implementation Working Group Final Report with Recommendations (2007) [ HTML | PDF (670 KB) | Help ]

Summary of Recommendations:

• Promotion of Educational Value
• Communications
• No major revision to content or format
• Improvement to the electronic format
• Outreach to Social Science Researchers
• Promotion as Voluntary Companion Document to the TCPS
• International Recognition

Initial Implementation Working Group (IIWG) 2005-2007

• Members
• Terms of Reference
• Minutes of the 1st meeting, September 12, 2005 - Ottawa, ON
• Minutes of the 2nd meeting, March 1, 2006 - Ottawa, ON

For further inquiries please contact:

Karen Wallace
Ethics Policy Advisor, Research Integrity
Ethics Office
Canadian Institutes of Health Research
160 Elgin Street, 9th Floor
Address Locator 4809A
Ottawa ON K1A 0W9
Tel.: 613-954-1383
Fax: 613-946-0885
E-mail: kwallace@cihr-irsc.gc.ca