A proof-of-principle prototype for CancerLinQ™ was demonstrated at the 2013 ASCO Annual Meeting. This “learning health system” prototype was first unveiled on March 27 at an ASCO-hosted panel discussion on big data in cancer care at the National Press Club in Washington, DC. At the ASCO Annual Meeting, attendees were able to view a demonstration of the CancerLinQ prototype in the exhibit hall as well as attend an educational session on the product, which ASCO calls the first demonstration of the feasibility of a health information technology-based learning health system. When the full build of CancerLinQ is available, it is expected to collect and analyze cancer care data from millions of patient visits and, using expert guidelines and other information, generate “real-time, personalized guidance and quality feedback for physicians.” Motivation for CancerLinQ was provided in part by an Institute of Medicine report that defined learning health systems as critical to the future of the nation’s healthcare system, and oncology as wellsuited for rapid health learning system development.
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 Prototype
The 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.