An Update on CancerLinQ—ASCO’s Big Data Cancer Database

TOP - August 2016, Vol 9, No 3 - Technology Update
Meg Barbor, MPH

Phoenix, AZ—CancerLinQ (Learning Intelligence Network for Quality) is a powerful database containing a vast amount of usable, searchable, real-world cancer information, created by oncologists, for oncologists, to improve the quality of patient care, according to updates presented at the 2016 American Society of Clinical Oncology (ASCO) Quality Care Symposium.

A national initiative inspired and informed by 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 one 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.

Why CancerLinQ?

Approximately 1.7 million people are diagnosed with cancer every year in the United States, but only a small percentage of adults with cancer can participate in clinical trials where their data are captured systematically and can be retrieved. The vast majority (97%) of patient data is locked away in unconnected files and servers—formerly paper records but now electronic health rec­ords (EHRs).

“Therefore these learnings are lost and can’t contribute to the greater knowledge,” said Dr Miller. “And quite frankly, many of our patients think we do a much better job than we currently do in having access to this information.”

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.

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.

A Learning Health System

CancerLinQ is defined as a learning health system, where research and practice can inform each other. “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,” Dr Miller added.

With this database, ASCO aims to improve provider performance and patient outcomes by providing guidance about the best evidence at the point of care; it does so by incorporating ASCO’s clinical guidelines as well as more than 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 a generation of insights and data exploration on a scale not seen by the limitations of EHRs.

“Another guiding principle was the fact that we recognize that hospitals and physicians will continue to use different commercial systems,” said Dr Miller “We have 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 like 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 HIPAA (Health Insurance Portability and Accountability Act) and all appropriate state and federal guidelines.

Practice Integration

“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 more than 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.”

Reference

Miller R. CancerLinQ update. Presented at: ASCO Quality Care Symposium; February 26-27, 2016; Phoenix, AZ.

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Last modified: August 10, 2016