Cancer org debuts prototype for knowledge network

The American Society of Clinical Oncology (ASCO) has completed a prototype of CancerLinQ, its health IT initiative designed to achieve higher quality, higher value cancer care with better outcomes for patients. The prototype demonstrates the feasibility of a health IT-based learning health system, which the Institute of Medicine (IOM) has defined as critical to the future of the of the nation’s healthcare system. 

With CancerLinQ, ASCO is developing a knowledge-generating computer network that will collect and analyze cancer care data from millions of patient visits, together with expert guidelines and other evidence, to generate 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,” said Sandra M. Swain, MD, ASCO president.  “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 CancerLinQ prototype includes de-identified data from 100,000 patients with breast cancer who were treated at leading cancer care institutions in the U.S. It reflects more than a year of formative work, including consultation with the oncology and IT communities; efforts to improve oncology data standards; and extensive technology and legal analysis. 

To build the prototype quickly, ASCO linked together several open-source IT applications.  Together, they encompass CancerLinQ’s planned core functions, including:

• Real-time data collection – The prototype can successfully accept any cancer care data, in any standard, directly from electronic health records and other sources, overcoming the long-standing hurdle posed by inconsistent health data standards. Data can range from genomic profiles to lab tests, and even physicians’ notes.
• Clinical decision support – The prototype can generate individualized guidance on the care of any given patient with breast cancer, based on automated, machine-readable versions of ASCO’s expert breast cancer guidelines. The full CancerLinQ system, when implemented, also will provide guidance based on the collective experiences of other similar patients.
• Data mining and visualization – The prototype allows exploration of an extensive database of information on the care of patients with breast cancer – including patient characteristics, treatments, and outcomes – to identify real-world trends and associations and new hypotheses for research.
• Quality feedback – The prototype can provide immediate feedback on physicians’ performance against 10 quality measures from ASCO’s Quality Oncology Practice Initiative (QOPI).

ASCO plans to publish its lessons learned over the coming year, and will use them to inform its development of the full CancerLinQ system.