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June 2016 VOL 7, NO 5
An Update on CancerLinQ—ASCO’s “Big-Data” Cancer Database
CancerLinQ is a powerful database containing vast amounts of usable, searchable, real-world cancer information, created by oncologists, for oncologists, to improve the quality of patient care.
A national initiative inspired and informed by the American Society of Clinical Oncology (ASCO), CancerLinQ was designed to contribute to high-quality, personalized cancer care for every patient by bringing all of the electronic data collected from the everyday care of every patient into 1 rapid learning network.
“This is ASCO’s big-data health information technology platform to improve cancer care,” said Robert S. Miller, MD, a medical oncologist and Vice President, ASCO Quality and Guidelines, and Medical Director of CancerLinQ. He presented an update on CancerLinQ at the 2016 ASCO Quality Care Symposium.
About 1.7 million people are diagnosed with cancer every year in the United States, but only a small percentage of adult cancer patients participate in clinical trials where their data are captured systematically and can be retrieved. The vast majority (97%) of patient data are locked away in unconnected files and servers (formerly paper records but now electronic health records), “that we all know don’t talk very well to each other,” said Dr Miller. “Therefore these learnings are lost and can’t contribute to the greater knowledge.”
“And quite frankly, many of our patients think we do a much better job than we currently do in having access to this info,” he added.
There has also been an explosion of knowledge and an increase in the data required for medical decision-making. “The number of facts per decision required to manage patients in the modern era of genomics and proteomics has gone up, but what of course doesn’t change is human cognitive capacity,” said Dr Miller. “Our brain can still only process about 5 facts per decision; the fact that we need computers and some way of managing big data is a reality, and something that is a true deficiency of our current delivery systems.”
Another phenomenon is the existence of more cancers. Many molecular drivers and many diseases “require a data management system that is simply outstripped by our current capacity,” he added.
A Learning Health System
CancerLinQ is defined as a learning health system. “A learning health system is a system where research and practice inform each other,” said Dr Miller. “Discovery is not just limited to the 3% of patients that are in clinical trials, but in the everyday care experiences that are rendered in clinics everywhere, that are basically locked in these servers.”
CancerLinQ aims to improve provider performance and patient outcomes by providing guidance about the best evidence at the point of care, and it does so by incorporating ASCO’s clinical guidelines as well as over 200 clinical quality measures from ASCO’s Quality Oncology Practice Initiative program. “The real-world outcomes captured as part of the learning health system will be linked back to the same measures and guidelines and will inform their development,” he stated.
Secondarily, the big-data aggregation that is enabled by CancerLinQ will allow for generation of insights and data exploration on a scale not seen before because of the limitations of electronic health records.
“Another guiding principle was the fact that we recognized that hospitals and doctors will continue to use different commercial systems,” said Dr Miller. “We had to create a platform that will accept data from different systems to enable interoperability across many sources.”
The web-based clinical user portal is accessed through a browser, allowing the user access to various applications, including quality performance indicators, data exploration tools, and a series of customizable and standardized analytic reports.
CancerLinQ also adheres to industry standards through a series of regulatory, administrative, technical, and physical safeguards fully compliant with the Health Insurance Portability and Accountability Act and all appropriate state and federal guidelines.
“The pace of practice engagement has increased sharply in the US over the past few months,” Dr Miller reported. CancerLinQ now holds more than 250,000 patient records in its system and has participation from over 2 dozen vanguard practices and more than 600 oncologists across the country, with a strong and growing pipeline of interest. “In the next month or so, we’ll be bringing on 2 large multisite health systems with many tens of thousands of records that will be added to the CancerLinQ database,” he added.
“Basically, the vision has always been that CancerLinQ is positioned squarely as part of the quality portfolio of ASCO,” said Dr Miller. “And most importantly, it is guided by ASCO’s mission to support all physicians, in every community and every setting.”
Miller RS. CancerLinQ update. Presented at: ASCO Quality Care Symposium; February 26-27, 2016; Phoenix, AZ.
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