This could be a very worthwhile project. As it is now, only cancer patients who are enrolled in trials are tabulated. This project intends to enroll all cases eventually. This could add immeasurably to determining efficacy of different therapies and protocols.
The ability to query vast swaths of data is transforming government and industry, and now doctors are beginning to apply the same ideas to cancer treatment. Today, the American Society of Clinical Oncologists is announcing that it’s completed work on a prototype for a “learning health system” called CancerLinQ that collects and analyzes cancer care data from the millions of patient visits on file around the country.
“”Information is locked away in unconnected servers and paper files.””
Currently, doctors only have easy access to clinical trial data, which only represents about three percent of the 1.6 million patients diagnosed with cancer every year. In a press release, Society president Dr. Sandra M. Swain says that very little is known about the majority of people who get cancer treatment “because their information is locked away in unconnected servers and paper files.” The goal of CancerLinq is to make this data accessible to doctors, in order to help guide treatment.
But making all this information more freely available isn’t without privacy concerns. In 1997, Carnegie Mellon computer science professor Latanya Sweeney famously showed how easy it was to de-anonymize health care information, pulling out a Massachusetts governor’s record from a “scrubbed” data set. ASCO says that the CancerLinQ project has undergone “extensive technology and legal analysis.”
“It’s hoped that the project will grow to encompass almost all patients in the country”
It will be another 12 to 18 months before ASCO is ready to roll out the new technology to doctors. For now, the project is starting small, with data from just 100,000 breast cancer patients, but doctors hope to expand it to encompass almost all patients in the country, especially those whose health conditions would exclude them from consideration for clinical trials. As Dr. Charles Penley tells The Wall Street Journal, “someone who has other conditions — heart disease, diabetes, et cetera… these are patients that we take care of in the real world every day.”