CancerLinQ Proof-of-Principle Prototype
Published Online: Monday, October 21, 2013
Sandra M. Swain, MD, FACP
ASCO President Sandra M. Swain, MD, said, “We are motivated by the stunning fact that 97% of today’s cancer care does nothing to advance our collective knowledge of the disease or its treatment because only 3% of adult cancer patients participate in clinical trials. The learning health system is intended to bridge this gap.” Swain pointed out that the information on that 97% of patients not participating in trials is in paper files and electronic records that currently don’t talk to each other well, if at all. “CancerLinQ will transform cancer care by unlocking that wealth of information and enabling every patient to be a cancer knowledge donor,” she says. The CancerLinQ prototype shows that such a learning health system is feasible and is providing lessons about the challenges of building a full-scale system. The full-scale system is planned to have the core functions of real-time data collection, clinical decision support, data mining and visualization, and quality feedback.
Building the PrototypeThe prototype was built in about 5 months using de-identified (anonymous) data from over 150,000 patients with breast cancer that was supplied by 26 practices in the US. The demonstration at ASCO included data from 100,809 patients that were available at the time the demonstration was prepared. Building the prototype required the collaboration of the oncology and information technology (IT) communities and included efforts to improve data standards in oncology, which is described below. Technology and legal analyses are also part of the development effort.
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