June 2013 Edition Vol.7, Issue 6

CancerLinQ Proof-of-Principle Demonstrated at 2013 ASCO Annual Meeting

CancerLinQ Proof-of-Principle Demonstrated at 2013 ASCO Annual Meeting

By Lynne Lederman, PhD

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 of the nation’s healthcare system, and oncology as well-suited for rapid health learning system development.

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.” Dr. 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.

Since the first demonstration in March, three working groups were established to help take the lessons learned from the prototype and implement them in the development of the full system; these groups are working on clinical decision support, data quality, data governance, and natural language processing governance. Clifford A. Hudis, MD, president-elect of ASCO compared the prototype demonstration he gave at a press briefing to the Wright brothers’ first flight—although they demonstrated that man could fly, no one bought a ticket from them. Likewise, the prototype of CancerLinQ is not necessarily the exact shape and form of the final product. However, the prototype, which uses several open-source IT applications and at least one proprietary application, has demonstrated that the core functions of the health learning system are feasible. These core functions include the following:

  • Real-time data collection of any type of data related to cancer care in any format, including laboratory test results and hand-written notes. The prototype didn’t use all types of data but the full system will learn over time what different types of data mean.
  • Clinical decision support that provides guidance on the care of a patient; in the prototype, guidance for a patient with breast cancer is linked to the ASCO Breast Care Guidelines; in the full version of CancerLinQ, treatment experiences for other similar patients will be accessible.
  • Data mining and visualization in the prototype allowed queries of a database on patients with breast cancer; this could be used to identify trends and associations.
  • Quality feedback would be immediate in real time, comparing the physician user’s performance to that of 10 Quality Oncology Practice Initiative (QOPI®) measures.

Ultimately, Dr. Hudis said, CancerLinQ will be able to establish correlations that could inform care and establish hypotheses for prospective clinical research. Physicians set up the system once, and every time an EHR is used, each patient automatically becomes a data donor. The data set could confirm one study and eliminate the need for additional studies, and also help avoid doing some studies that might be fruitless. Robert Hauser, Pharm D, PhD, Senior Director of Quality at ASCO, emphasized that CancerLinQ will not replace clinical trials, but will be hypothesis generating. 

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