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The ASCO Institute for Quality, LLC, is building CancerLinQ™, a cutting-edge health information technology (HIT) platform that will revolutionize how we care for people with cancer. By enabling us to learn from each of the millions of individual patients living with cancer nationwide, CancerLinQ will improve the quality and value of cancer care for all.
CancerLinQ’s development is well under way. Once complete, CancerLinQ will aggregate and analyze a massive web of real-world cancer care data in order to:
- Provide real-time quality feedback to providers: CancerLinQ will enable oncology practices to measure how their care compares against guidelines and compares to their peers based on aggregated reports of quality, offering instant feedback and guidance for improvement.
- Feed personalized insights to doctors: CancerLinQ’s real-time clinical decision support will help physicians choose the right therapy at the right time for each patient, based on clinical guidelines and the experiences of many similar patients.
- Uncover patterns that can improve care: Powerful analytic tools will reveal new, previously unseen patterns in patient characteristics, treatments and outcomes that can lead to improvements in care.
Cancer science and information technology are advancing rapidly, but the way we care for patients today cannot fully capitalize on those advances.
Most of what we currently know about cancer treatment is based on just the 3 percent of patients who participate in clinical trials. We know very little about the remaining 97 percent of patients – from the molecular characteristics of their tumors to the outcomes of their treatments – because these details are locked away in unconnected electronic and paper records. Meanwhile, oncology professionals are faced with a proliferation of scientific results and novel treatments as we enter the era of highly personalized cancer care. Patients are increasingly presenting with “rare cancers” narrowly defined by their molecular characteristics, sometimes making the best course of treatment unclear.
CancerLinQ will allow us to learn from every patient with cancer. It will organize the explosion of cancer information into usable knowledge. And it will help ensure that every cancer patient and physician, wherever they are, has the very latest knowledge at their fingertips.
Our world is increasingly data-driven. Yet modern big data tools have hardly been used where they matter most: to improve human health.
The future of cancer care requires a health system that continually learns from itself, where new patients and new experiences increase knowledge and improve care for all. To achieve this, we need to create what the Institute of Medicine has called a “learning health system” – a system that “uses advances in IT and improved information sources to deliver the best care, personalized for each patient.”
CancerLinQ will realize that vision. Once completed, CancerLinQ will place a new universe of practical insights at the fingertips of:
- Doctors – Supporting their decision-making by matching each patient’s data against national quality standards, and against the experiences and outcomes of patients like them.
- Patients – Giving them access to personalized treatment information from their medical team, and improving the coordination of their care as their information is shared seamlessly and securely across their medical team.
- Cancer Researchers – Creating a massive body of de-identified data on patient care and outcomes to conduct secondary research.
CancerLinQ is well on its way becoming a reality. The ASCO Institute for Quality, LLC, demonstrated proof of principle through the completion of a prototype in 2013, and has embarked on the phased development of the full CancerLinQ system. This effort will produce a series of successfully more powerful quality improvement tools, the first of which will be launched in 2015.
Read more about our progress below.
- Successful Prototype Completion – The CancerLinQ prototype was completed in just eight months and included more than 170,000 de-identified medical records of breast cancer patients provided by oncology practices around the United States. It demonstrated the feasibility of all major components of a learning health system and provided lessons that are guiding the ASCO Institute for Quality's development of the full system.
- Launch of Phased Development – The ASCO Institute for Quality established the core functional requirements of CancerLinQ and is moving quickly to develop its first components. We are currently in the process of selecting a vendor, or consortium of vendors, to assist with the development of the full CancerLinQ system.
Development of CancerLinQ will occur in phases over several years. Early components will center on providing next generation quality measurement that builds on ASCO’s Quality Oncology Practice Initiative (QOPI®). Later components will encompass more powerful quality improvement tools, real-time clinical decision support and analysis of thousands of patient experiences to create a continuous cycle of learning.
- Data Governance and Advisory Committees – The ASCO Institute for Quality has engaged leading thinkers from an array of relevant fields to advise on the design and implementation of CancerLinQ. Our advisory committees include oncologists, patient advocates, health outcomes researchers, ethicists, HIT experts and many others. CancerLinQ is especially focused on meeting patient needs. We have established a patient advisory committee to help guide our efforts and ensure that CancerLinQ meets patient’s healthcare needs, as well private and data security standards.
- Financial Backing – Foundations, heath care companies and private donors have expressed their confidence in the CancerLinQ vision through their financial support. The ASCO Institute for Quality is actively seeking additional support for this endeavor through the Conquer Cancer Foundation.
Want to stay up to date on CancerLinQ’s development? Sign up for updates from ASCO today.
Updates from ASCO
- November 30, 2012: ASCO Secures Major Funding and Data License Agreements for CancerLinQ™
- November 13, 2012: ASCO Applauds Helsinn’s Donation of $1 Million to Conquer Cancer Foundation in Support of CancerLinQ
- September 6, 2012: CancerLinQ Addressing Institute of Medicine Core Recommendations for "Learning Health System"
- July 17, 2012: ASCO Begins First Phase of CancerLinQ, the Development of a Prototype of a Breast Cancer-Specific Rapid Learning System
CancerLinQ in the News
- National Public Radio: ASCO President Sandra M. Swain, MD, Discusses Harnessing Big Data to Treat Cancer
- Wall Street Journal: 'Big Data' for Cancer Care
- Computerworld: How big data will save your life
- Mashable: Doctors Use Big Data to Improve Cancer Care
- CIO Journal: 'Keep Moving' to Maintain a Competitive Advantage
- SmartPlanet: Can big data help fight cancer?
- Susan G. Komen: ASCO Approaches an Important Milestone with the First CancerLinQ Prototype
- iHealthBeat: Could New Cancer Care Database Be a 'Game Changer' for Medicine?
- BioCentury: ASCO unveils CancerLinQ prototype to aid in treatment decisions
- ARN: Health-IT early adopters well-poised for big-data advances in clinical medicine
- Slashdot: ASCO's CancerLinQ Brings Big Data to Cancer Treatment
- Chemotherapy Advisor: ASCO Debuts the CancerLinQ Prototype
- PhysBizTech: New Cancer Care Database Changing Game?
EVOLUTION OF ASCO QUALITY PROGRAMS
CancerLinQ represents the next major step in ASCO’s efforts to improve the quality of cancer care. It builds on ASCO’s unparalleled expertise in oncology quality programs, overseen by the ASCO Institute for Quality.
ASCO issued its first clinical practice guideline in 1994. In 2006, ASCO launched QOPI, the first national program to help oncology practices measure and improve the quality of care. QOPI’s rigorous set of more than 160 quality measures allows oncologists to monitor and hold each other accountable to advance their quality of care together. A third of U.S. oncology practices, nearly 1,000, are registered in the program.