For practicing oncologists, treating patients isn’t always about referring to the latest treatment guidelines or following the standard of care for a particular disease; often individual patient circumstances can make a difference in which therapies will lead to the best outcome. However, in this era of targeted therapy and personalized treatment, the most effective means by which to gather relevant treatment information is through knowledge sharing.

Currently, only about 3% of patients with cancer actually participate on clinical trials, meaning the data supplied through these trials which is subsequently widely disseminated is based on this patient population. Thus the experience of nearly 97% of patients with cancer is essentially “locked” in paper files or electronic health records accessed only by the office staff or institution in which the patient is managed.

In order to unlock this wealth of information, the American Society of Clinical Oncology (ASCO) has recently completed the prototype of a knowledge-generating database called CancerLINQ™ (Learning Intelligence Network for Quality), which will collect and analyze cancer care data from a multitude of patient visits. Ultimately, CancerLINQ will combine information about each patient’s clinical situation and management, current evidence, and treatment guidelines to serve as an easily accessible health information network for oncology professionals.

“CancerLINQ will be like Google for oncology care. As you enter case information, the right decision support will come to you right at the point of care, to help you manage that patient better,” said Allen S. Lichter, MD, FASCO, Chief Executive Officer of ASCO.

According to a press release recently posted by ASCO, the prototype of CancerLINQ was realized after reports from the Institute of Medicine revealed a need for a learning health system that would combine “science, informatics, incentives, and culturewith “best practices seamlessly embedded,” which can then be accessed easily by cancer care teams in order to provide the best possible care for their patients.

At a recent press briefing at the National Press Club in Washington, D.C., the CancerLINQ prototype was demonstrated as “proof-of-principle” for attendees. Panelists included a number of leading experts on health information technology from government, industry, and physician practice, including W. Charles Penley, MD, FASCO, an oncologist at Tennessee Oncology. Incidentally, Tennessee Oncology was one of the institutions that contributed patient data to the prototype.

“ASCO has shown not only that a learning health system is possible, but that it can be easy for physicians to participate,” said Dr. Penley, who 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 initial data included in the prototype included approximately 100,000 de-identified (anonymous) patients with breast cancer who were treated at leading cancer care institutions around the United States.  The prototype allows for exploration of this data, which encompasses various treatments, patient characteristics, and outcomes. Not only is access to this information anticipated to provide oncologists with best-practice scenarios, but it can also guide researchers in identifying patterns of real-world patient data that may lead to improved therapeutic decision-making.   

Currently, about 60% of oncologists are using electronic health records (EHRs) in their practice; one of the significant aspects of CancerLINQ is that it can work with data in any EHR format, thus allowing relevant patient data to be easily transferable. ASCO is currently also working to ensure that CancerLINQ complies with all HIPAA (Health Insurance and Portability and Accountability Act) regulations.

“I think the donors should be excited because this is…potentially game-changing work in oncology. This is the opportunity to be part of something that could really radically alter the landscape of cancer care,” notes Dr. Penley.

For more information about ASCO CancerLINQ ™, visit http://www.asco.org/cancerlinq.