Coordinated Data Development Initiative: Enhancing The Access To And Use Of Standardized Treatment Data In Canada

Cheryl LOUZADO, Canadian Partnership Against Cancer, Canada
HASAN H. 1 , REED A. 1

1 Strategy, Evaluation & Analytics Division, Canadian Partnership Against Cancer, Toronto, Canada

In Canada, and internationally, many rich repositories of data exist, however reports have highlighted barriers to the meaningful use of this data, including less than adequate access, poor data linkages and privacy concerns. There are several types of data, including treatment data in particular, which are either unavailable or difficult to access, that would greatly enhance our ability to advance the cancer system. The Canadian Partnership Against Cancer (CPAC), which is an independent organization funded by the Federal Government of Canada to accelerate action on a national cancer control strategy, undertook an initiative (Coordinated Data Development Initiative) to enhance the access to and use of standardized cancer treatment data across Canada through the creation of linkage and/or data collection. 
The initiative consists of developing and establishing a data standard for cancer treatment, determining what data sources currently exist that map to the standard, cataloguing data access policies, and through projects, testing the feasibility of accessing standardized treatment data on a small scale in multiple jurisdictions. The results of these projects may inform future programming with respect to data linkages in Canada.
An expert validated data standard for cancer treatment has been developed which is inclusive of a core set of treatment data elements that are feasible to access/collect across Canadian jurisdictions. Projects are currently underway to test the feasibility of accessing standardized data.
The use of cancer treatment data for planning, management, policy development, research and monitoring population and public health is fundamental to advancing cancer control efforts. This initiative will accelerate the uptake and translation of the best evidence and knowledge into practice and policy as well as evidence-informed decision-making at all levels of the cancer control system.
Funding source
CPAC is funded by Health Canada, a department of the Federal Government of Canada