Cancer is a collection of related genetic diseases. These are caused by DNA mutations that change how cells grow and develop. The term ‘genome’ refers to the complete set of DNA. Recent innovations allow us to sequence the complete set of DNA and RNA in a patient’s cancer, known as the tumour genome. The hope is that the knowledge generated about the tumour genome compared to the normal genome will help us to develop treatments that target and kill cancer cells based on specific cancer-causing mutations. It will also help us repurpose drugs that have been approved for other cancers sharing similar mutations. This mutation targeted approach is called precision oncology.
To date, Canadians have had limited access to precision oncology because of a lack of data about the clinical effectiveness (does it work?) and cost-effectiveness (can we afford it?). Answering these two questions requires coordinating large amounts of different kinds of data. Before precision oncology can benefit Canadian cancer patients, data systems, policies, and practices are needed to get the right data, to the right researchers and care providers, at the right time, in the right way.
Healthcare systems that generate data, produce evidence, and use this evidence to guide patient care are called Learning Healthcare Systems. Unfortunately, current systems are not designed to allow for learning healthcare. In response to this unmet need, major Canadian precision oncology initiatives are building platforms for data integration and sharing to enable learning healthcare systems. To guarantee the success of precision oncology initiatives, we need to understand their economic impact and make sure that their design is in line with patient and public values as well as Canadian laws and regulations.
Our Canadian Network for Learning Healthcare Systems and Cost-Effective ‘Omics Innovation (CLEO Net) will meet these needs by partnering with Canadian learning healthcare system initiatives for precision oncology. Together we will: (1) inform the design of learning healthcare systems that turns genomic knowledge into sustainable cancer care; (2) advance research; (3) build capacity to deliver this research and its benefits into the future; and (4) produce research that yields individual, social, and economic benefits for all Canadians.