Best Practices for Protecting Privacy in Health Research
Recognizing that one of the key ethical challenges for the health research community is to appropriately protect the privacy of those individuals whose information is used for research purposes, CIHR has initiated and promoted dialogue with the broad health research community on a range of privacy-related matters for many years. In particular, a multi-stakeholder workshop in November 2002 entitled Privacy in Health Research: Sharing Perspectives and Paving the Way Forward resulted in a number of recommendations including that CIHR initiate the development of privacy best practices and promote the harmonization of privacy laws and policies that impact on health research.
Following on these recommendations, CIHR established a Privacy Advisory Committee (PAC) in 2003 to advise CIHR on the development of privacy best practices for health research, and on strategies for consultation, communication and knowledge translation. CIHR, with the advice of PAC, developed Guidelines for protecting privacy and confidentiality in the design, conduct and evaluation of health research- Best Practices, Consultation Draft (April 2004). A wide range of stakeholders was consulted on this draft from March through September, 2004. The current version of the Privacy Best Practices was revised to reflect the feedback received.
CIHR's Privacy Advisory Committee (PAC) met on October 18-19, 2004 to review feedback received during the public consultations and discuss next steps. PAC recommended that these Best Practices be implemented with adequate education and support, and after a two-year pilot-testing phase be revised and become mandatory CIHR funding policy. PAC also recommended that the Best Practices should be referred to the Interagency Advisory Panel on Research Ethics (PRE) with a view to encouraging their eventual application, in revised form, as Tri-Agency funding policy.
The Privacy Best Practices document (September 2005 version) is now in an initial implementation phase.