Toward a population-based approach to end-of-life care surveillance in Canada: initial efforts and lessons

This paper describes a project undertaken by the Hospice Palliative End-of-Life Care Surveillance Team Network--one of four Cancer Surveillance and Epidemiology Networks established by the Canadian Partnership Against Cancer in 2009 to create information products that can be used to inform cancer control. The project was designed to improve the quality and use of existing electronic patient databases in its member organizations. The project's intent was to better understand terminally ill cancer patients in their final year of life, with noncancer as comparison. The network created an early design for a Web-based end-of-life care surveillance system prototype. Using a flagging process, anonymized data sets on cancer/ noncancer palliative patients and those who died in 2008-2009 were extracted and analyzed. The Australian palliative approach was adapted as the conceptual model based on the data sets available. Common data elements were defined then mapped to local data sets to create a common data set. Information products were created as online reports. Throughout the project, members were engaged in knowledge translation. Overall, the project was well received by network members. There are still major data-quality and linkage issues that require further work.