The Ontario Cancer Data Linkage Project: Creating Infrastructure for Cancer Research
Project Leader: Craig Earle, MD, M.Sc.
• Director, Health Services Research Program, Cancer Care Ontario and the Ontario Institute for Cancer Research;
• Senior Scientist, Institute for Clinical Evaluative Sciences;
• Scientist, Clinical Epidemiology -- Odette Cancer Research Program, Sunnybrook Research Institute;
• Professor of Medicine, University of Toronto;
• Medical Oncologist, Gastrointestinal Oncology, Odette Cancer Centre.
The need to improve access to data housed at ICES has been a longstanding issue to scientists working outside Toronto. There are successful examples of data sets being prepared and released directly to investigators in other jurisdictions, most notably the SEER-Medicare linkage of tumour registry and administrative claims data in the United States.
We have created a data usage model through the HSR Program, situated at ICES, to enhance the data resources available for cancer health services research in Ontario. To that end, the cd-link project has expanded the scope of the data sharing agreement between ICES and CCO, established a new data release mechanism for direct access to anonymized patient-level data, and supported the infrastructure needed to create satellite sites for ICES at Queen’s University, Ottawa Health Research Institute, and the University of Toronto, with a wave of new centres likely to occur in the future
It is estimated that Pan-Ontario ICES will lead to a 50 per cent increase in the number of cancer health services researchers working with comprehensive linked population data sets in the next five years. Potentially, this model of data access for research will attract new researchers into the field of cancer health services research and could be broadened to include other diseases and expanded to other provinces.