ASCOʼs Continuous Learning Prototype Passes Proof-of-Principle Test

Abstract

FigureWASHINGTON, DC—The ambitious continuous learning database project of the American Society of Clinical Oncology known as CancerLinQ (OT, 8/25/12) has demonstrated its feasibility for the first time, according to speakers at a news briefing at the National Press Club here. The new prototype, demonstrated for briefing attendees on a hypothetical post-surgical patient with hormone-responsive breast cancer, included anonymous data from 100,000 breast cancer patients treated at U.S. cancer care sites. CancerLinQ is not the only cancer continuous learning database—Georgetown University has pioneered a similar project (see box). The prototype CancerLinQ, which makes available to oncologists via computer massive amounts of data to inform clinical decision-making and improve the quality of cancer care, has now demonstrated through a real-time testing process that it can work in actual practice, said ASCO President Sandra M. Swain, MD, Medical Director of the Washington Cancer Institute at MedStar Washington Hospital Center. Swain noted that the majority of oncologists, about 60 percent, are currently using electronic health records (EHRs), a necessity for CancerLinQ. Swain explained that when ASCO embarked on this multi-stage project about a year and a half ago—which she described as “very bold” and “scary”—it was with the continuous learning vision of the Institute of Medicine (IOM) in mind. “Our work is really grounded in the work of the IOM over the last few years,” she said.Figure: ASCO President-Elect CIFFORD HUDIS, MD, noted that one key benefit of the new prototype is that it can accept data from different electronic health records: “The system is independent of the EHR that the physician is using. We will work with anyone; we hope all vendors will end up with transformable data.”The vision, as set forth in a number of IOM reports, seeks to help clinicians both learn from and contribute to diagnostic and treatment data through a health information technology (HIT) computerized database containing electronic health records (EHRs). Now, she said, “the physicians are just clamoring to give us the data,” because they realize its importance in making informed clinical decisions. She said use of the large data set should help to counter the fragmentation in cancer care that makes it very difficult to draw insights from the collective clinical experience with cancer patients. “It means having the whole medical community available for an opinion. It confirms that every cancer patient can be an information donor.” The database makes available a vast amount of valuable patient data that cannot now be mined because it is hidden away—since only about three percent of adult cancer patients participate in clinical trials. “The worst situation is not having information,” Swain continued. “Every time I see a patient, there are one or two things that make that patient different. This helps us to get more answers.” She said it isn't just oncology that will benefit, but that the data gathered will likely be relevant to other diseases as well. ‘Proof-of-Principle Prototype’ “This is a proof-of-principle prototype,” said ASCO President-Elect Clifford A. Hudis, MD, Chief of the Breast Cancer Medicine Service and Attending Physician at Memorial Sloan-Kettering Cancer Center and Professor of Medicine at Weill Medical College. “It's a real-time, push-of-the-button load of the patient data upfront.” Hudis said much work on the prototype remains, and that over the next year “we're going to write white papers on what we've learned.” He noted that right now ASCO's Quality Oncology Practice Initiative (QOPI), is paper-based—an initiative that could become much more streamlined and efficient if CancerLinQ is eventually widely adopted. One key benefit of the new prototype is that it can accept data from different EHRs, he said. “The system is independent of the EHR that the physician is using. We will work with anyone; we hope all vendors will end up with transformable data.”Figure: ASCO President SANDRA M. SWAIN, MD, said use of the large data set should help to counter the fragmentation in cancer care that makes it very difficult to draw insights from the collective clinical experience with cancer patients.In the hypothetical breast cancer case demonstrated, the patient is put on an aromatase inhibitor but develops arthralgia. The CancerLinQ database prototype tells her physician to consider using tamoxifen as an alternative, and provides supporting data for that treatment choice. “For 25 years I've been doing one-on-one medicine,” said another speaker, W. Charles Penley, MD, a partner with Tennessee Oncology, PLLC, Board Chair of the Conquer Cancer Foundation, and a member of the Dean's Advisory Board of the College of Arts and Sciences at the University of Tennessee. “Patients have been telling me, ‘Doctor, I want you to learn from my case to help other patients.’ This [CancerLinQ] is that taken to the modern information age.” Penley, who is one of about 25 clinicians in the network testing the ASCO database prototype and whose practice contributed breast cancer patient data to it, added, “This tool really can be a game changer in that regard.” What it means for cancer patients, he said, is that they can have confidence that they are receiving the highest quality care no matter where they are located. The database prototype, which he called “a remarkable step forward,” offers “an opportunity to query not just a few experts known to us, but the collective experience of treating clinicians—thus adding “second opinions times multiples.” Lessons from Pediatric Oncology Lynn M. Etheredge, who leads the Rapid Learning Project at George Washington University, said lessons from pediatric oncology can be valuable for CancerLinQ as it moves forward. Pediatric oncologists built a system to capture data from every patient as if he or she were on a clinical trial and then learn from that experience, noted Etheredge, who worked for the White House Office of Management and Budget in the Carter and Reagan Administrations, and who proposed the concept of the “rapid learning health system” in a special issue of Health Affairs in 2007 (26: w107-w118). “Pediatric oncologists realized early on that there were genetic differences,” he said. “Hopefully we will have the same success in treating adult patients.” Asked by OT if he could have envisioned his concept of a rapid learning health system coming to this database prototype point, Etheredge said, “I'm an optimist,” but noted that “This is astonishing.” He said that in the past physician groups have largely been reactive—responding to “things done to them,” and he praised ASCO for being proactive, innovative, and forward-thinking. “What we are saying now is that we have put the stake in the ground; we have demonstrated everything we wanted to demonstrate,” Joshua Mann, ASCO's Associate Director for Oncology Technology Solutions, Quality and Guidelines, said in an interview. “Now we're ready to engage the broader audience.” For the full CancerLinQ system, “we plan to siphon off data feeds from anyone,” including small oncology practices, not just large cancer centers. The message is: “Send us whatever you have however you can.” He noted that “machine-learning algorithms” convert data into a standardized format, thus allowing practices using different EHRs to participate in the continuous learning database. Lombardi's G-DOC Integrates New Knowledge with Practice At Georgetown University's Lombardi Comprehensive Cancer Center, Director Louis M. Weiner, MD, has pioneered a continuous learning system similar to CancerLinQ called Georgetown Database of Cancer, known as G-DOC. This system uses both local data and publicly available data sets to put the concept of personalized medicine into practice, Weiner explained. Commenting on ASCO's CancerLinQ prototype proof-of-principle, Weiner—a member of the Board of Scientific Advisors of the National Cancer Institute—said, “CancerLinQ is very ambitious. Currently, cancer specialists have access to only limited data to help them make critical life-altering decisions for their patients. In particular, it is very difficult to knowledgeably personalize therapies based upon a person's particular circumstances that are dictated by their genetics, comorbidities, and molecular properties of the cancers that afflict them. G-DOC has been designed as a first step towards that goal.”FigureWeiner noted that while there are patient confidentiality issues that need to be overcome in drawing on large databases to make treatment decisions, the concept is sound. It is clear that “it would be logical and desirable to link multiple datasets and then to create physician- and patient-friendly user interfaces that allow for shared decision-making that is based on a nuanced understanding of who to treat, what to use, and when to use it.”