ASCO Forges Ahead with CancerLinQ

The American Society of Clinical Oncology (ASCO) is expanding its CancerLinQ health information technology initiative from the pilot stage to a working system, whose first elements will debut by early 2015.

CancerLinQ is designed to improve patient care by aggregating electronic health records to provide real-time data to physicians, patients, and researchers.

“I think this project and others will really allow us to turn a corner in cancer care,” says ASCO President Clifford Hudis, MD, FACP, chief of the Breast Cancer Medicine Service at Memorial Sloan-Kettering Cancer Center in New York, NY. Large-scale data mining offered by such projects will bring a “quiet revolution” in the fight against cancer, he says.

ASCO began the CancerLinQ initiative in response to a call from the Institute of Medicine to create rapid learning systems, in which routinely collected real-time clinical data can help to drive both quality improvement and scientific discovery.

Currently, only 3% of adult cancer patients are tracked electronically in clinical trials, and data on other treatment outcomes generally aren't being used effectively in research, says Hudis.

In March 2013, ASCO announced the completion of a CancerLinQ pilot that features the de-identified records of more than 170,000 breast cancer patients. “The CancerLinQ pilot demonstrated that we can successfully import data from a variety of different electronic medical records systems,” says Hudis. “In addition, we were able to demonstrate that the medical community is enthusiastic about sharing data.”

CancerLinQ's initial working version will focus on improving patient care based on ASCO's Quality Oncology Practice Initiative, a practice-based quality assessment and improvement program. CancerLinQ will progressively incorporate data on patients with various types of cancer. Over time it will add real-time clinical decision support and, eventually, the ability to analyze millions of patient experiences.

Among its benefits, CancerLinQ is expected to improve post-market drug safety research. “With a system like this, adverse patterns may flag a problem in a matter of weeks,” Hudis says.

CancerLinQ's primary role is as a quality improvement tool, but the system eventually could prove to be a gold mine for many types of research as well. “Health services and other researchers could potentially investigate patterns of care, health economics, and comparative effectiveness,” he says.

Down the road, the system also could aid in generating hypotheses for treatment and in retrospective studies that follow phase III clinical trials. “You're always looking for corroboration of results,” Hudis notes. As CancerLinQ becomes widely adopted and gathers data from most cancer patients in the United States, it will provide results for cohorts that are larger than those in individual clinical trials and that don't suffer from some of the selection biases of trials, he points out.