Prototype Includes 100,000 Patient Records; Demonstrated at Expert Panel Discussion
on Harnessing “Big Data” to Improve Cancer Care
ALEXANDRIA, Va. —The American Society of Clinical Oncology announced today that it has completed a prototype of CancerLinQ™, the Society’s ground-breaking health information technology (HIT) initiative to achieve higher quality, higher value cancer care with better outcomes for patients. The prototype demonstrates, for the first time, the feasibility of a HIT-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. The prototype was shown at the National Press Club during an ASCO-hosted panel discussion on big data in cancer care.
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, President of ASCO. “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.”
CancerLinQ realizes the vision of a learning health system as described in a landmark 2012 IOM series of reports. In the IOM’s vision, “science, informatics, incentives, and culture are aligned for continuous improvement and innovation – with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral by-product of the delivery experience.” 
“In the oncology community, the big data transformation of healthcare is well under way,” said Lynn Etheredge, director of the Rapid Learning Project at George Washington University, a member of the IOM panel that developed the 2012 report and a speaker in today’s panel discussion. “The future of our healthcare system hinges on the success of initiatives like this – and on the willingness of healthcare providers, payers and policymakers to support their implementation.”
Prototype Uses Real-World Breast Cancer Data
ASCO built the CancerLinQ prototype to demonstrate the feasibility of such a system and to provide lessons about the technological and logistical challenges involved in full-scale implementation. The prototype includes “de-identified” (i.e., anonymous) data from 100,000 patients with breast cancer who were treated at leading cancer care institutions around the United States. 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, will also 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®).
"With a learning health system like CancerLinQ, we’ll be able to advance the treatment and prevention of cancer simply by caring for our patients,” said Clifford A. Hudis, MD, ASCO President-Elect. “The prototype is a major step toward that vision. Although we have years of hard work ahead of us, it’s now clear that we have the ability to collect data and provide feedback enabling the delivery of cutting-edge, state-of-the-art care to patients everywhere.”
“ASCO has shown not only that a learning health system is possible, but that it can be easy for physicians to participate,” said W. Charles Penley, MD, an oncologist at Tennessee Oncology, which contributed breast cancer patient data to the prototype. Dr. Penley also serves as Chair of ASCO’s Conquer Cancer Foundation. “Since the prototype accepts data in any format, it took just a few hours of staff time to securely contribute data on more than 12,000 of our patients.”
The prototype will ultimately include data on more than 133,000 cases from oncology practices across the country, far exceeding initial expectations and lending further strength to the lessons that can be drawn from the prototype. ASCO plans to publish its lessons learned over the coming year, and will use them to inform its development of the full CancerLinQ system.
ASCO-Hosted Panel Discussion: Transforming Cancer Care through Big Data
Today at the National Press Club in Washington, D.C., ASCO hosted a panel discussion with leading thinkers on HIT from government, industry and physician practice. In addition to the CancerLinQ prototype, speakers explored the potential of learning health systems to transform patient care while strengthening the nation’s fragmented healthcare system. They also discussed the need for collaboration in the development and implementation of approaches like CancerLinQ.
“The door to better, smarter, more efficient healthcare is now open, and the medical community is taking us through,” said Janet M. Marchibroda, Director of the Bipartisan Policy Center’s Health Innovation Initiative and moderator of the event. “CancerLinQ is not only addressing the needs of people with cancer. It is also providing a model for other specialties and for the medical field as a whole.”
In addition to Ms. Marchibroda, speakers at the event included:
- Lynn Etheredge, Director, Rapid Learning Project, George Washington University and member of the IOM Committee on the Learning Health Care System in America
- Eric Perakslis, PhD, Former Chief Information Officer, U.S. Food and Drug Administration
- Sandra M. Swain, MD, FACP, ASCO President and Medical Director, Washington Cancer Institute, MedStar Washington Hospital Center
- Clifford A. Hudis, MD, ASCO President-Elect
- William Mann, PhD, President & CEO, Helsinn Therapeutics (US)
- W. Charles Penley, MD, Physician, Tennessee Oncology and Chair of ASCO’s Conquer Cancer Foundation
A webcast of the event is available on ASCO’s website, at www.asco.org/bigdatawebcast.
CancerLinQ™ is supported by the Conquer Cancer Foundation of the American Society of Clinical Oncology. CancerLinQ is a project of CancerLinQ, LLC. For more information, please visit: www.CancerLinQ.org.
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The American Society of Clinical Oncology (ASCO) is the world’s leading professional organization representing physicians who care for people with cancer. With more than 30,000 members, ASCO is committed to improving cancer care through scientific meetings, educational programs and peer-reviewed journals. ASCO is supported by its affiliate organization, the Conquer Cancer Foundation, which funds ground-breaking research and programs that make a tangible difference in the lives of people with cancer. For ASCO information and resources, visit www.asco.org. Patient-oriented cancer information is available at www.cancer.net.
About the Conquer Cancer Foundation
The Conquer Cancer Foundation is working to create a world free from the fear of cancer by funding breakthrough research, by sharing knowledge with physicians and patients worldwide, and by supporting initiatives to ensure that all people have access to high-quality cancer care. Working in close collaboration with a global network of top scientists and clinicians, as well as leading advocacy and research organizations, the Foundation draws on the passion and expertise of the more than 30,000 oncology professionals who are members of its affiliate organization, the American Society of Clinical Oncology (ASCO). For more information, visit www.conquercancerfoundation.org.