The American Society of Clinical Oncology (ASC) has launched a cancer database that links the “de-identified” (i.e., anonymous) data from 100,000 patients with breast cancer, the group announced this week. According to ASCO, the database, called CancerLinQ, will be able to collect and analyze cancer care data from millions of patient visits, and ultimately give real-time, personalized guidance and quality feedback for physicians.
“Today we know very little about the experiences of most people with cancer because their information is locked away in unconnected servers and paper files,” Sandra M. Swain, M.D., President of ASCO, said in a statement. “Only the 3 percent of patients who participate in clinical trials are able to contribute to advances in treatment. CancerLinQ will transform cancer care by unlocking that wealth of information and enabling every patient to be a cancer knowledge donor.”
The prototype, ASCO says, isn’t the actual database, but instead was built to “demonstrate the feasibility of such a system,” while providing lessons about the technological and logistical challenge. ASCO spent a year on the database and consulted with the oncology and IT communities on it. ASCO used several open-source IT applications to build this prototype quickly.
It includes features, which ASCO says will be a part of the finished CancerLinQ data, including real-time data collection, clinical decision support, data mining and visualization, and quality feedback. Ultimately, it will include data on more than 133,000 cases from oncology practices across the country. Lessons from the prototype will be published by ASCO in the coming year.