Research on health services and policy, population and public health depends heavily on the ready availability of large volumes of existing data about people. Such data include health surveys; hospital, physician and laboratory records; provincial and federal billing and registration data; birth and death certificates; vital statistics; socio-demographic data; and, employment records.
CIHR has developed a series of case studies involving secondary use of data. The objective of this initiative was to help demonstrate in concrete terms: the purpose of specific research studies; the rationale for undertaking them; the potential health benefits they can lead to or have led to; what information is required at what level of identifiability and for what purpose; how the information required is actually collected, used and disclosed; how consent is obtained and in what form; where consent is not obtained, an explanation of why not; what security measures are implemented to protect the data; how long data is retained, for what purposes and under what conditions.
It is hoped that these case studies will serve as an opportunity for non-health researchers to better understand the inherent complexities of research, as well as an opportunity for health researchers themselves to exchange on proposed best practices.
All Privacy and Confidentiality in Health Research documents are available at the Ethics Resources and Publications section of the CIHR Website.