This past November, ASCO announced the launch of CancerLinQ Discovery™, a big data learning platform physicians and researchers can use to analyze highly curated, de-identified, real-world cancer care data sets to broaden their clinical knowledge about specific cancers and eventually improve patient outcomes. These customizable data sets will be derived from the rapidly growing CancerLinQ® database, which now includes more than 1.5 million patient records from more than 70 oncology practices across North America.
Pharmaceutical company AstraZeneca is the Founding Enterprise Partner of CancerLinQ Discovery and has agreed to a 5-year engagement with ASCO to use CancerLinQ Discovery and simultaneously provide feedback to ensure that the platform is fulfilling its mission to advance oncology research and improve treatment and outcomes. Additional enterprise partners are expected to join CancerLinQ Discovery.
We see CancerLinQ® and CancerLinQ Discovery™ as an ambitious but critical offering to help oncologists take better care of patients and to contribute to better outcomes for patients. I imagine oncologists of the future will wonder how we practiced without it!— Clifford A. Hudis, MD, FACP, FASCO
“These partners will work with us to help build out CancerLinQ Discovery and make sure that it meets the needs of all our users,” said Clifford A. Hudis, MD, FACP, FASCO, Chief Executive Officer of ASCO and Chair of the CancerLinQ LLC board.
Data requests from CancerLinQ Discovery subscribers, which will initially include researchers, physicians, public health agencies, and members of the life sciences industry, will be reviewed by the CancerLinQ Discovery Research & Publications Committee, whose members include CancerLinQ’s Medical Director, Robert Miller, MD, FASCO, FACP, oncologists, researchers, patients, payers, and policymakers, among others.
The ASCO Post talked with Dr. Hudis about how CancerLinQ Discovery will help facilitate improvements in cancer care, which will ultimately lead to better patient outcomes, and the impact CancerLinQ is having on oncology practices.
Please talk about the goals of CancerLinQ Discovery.
Sure. Let me first take a step back and review CancerLinQ as a whole and then CancerLinQ Discovery. CancerLinQ is our big data rapid-learning technology platform that is going to allow oncologists to improve their understanding and treatment of cancer. CancerLinQ Discovery is a subset of CancerLinQ that will be more intensely curated from the de-identified patient data in CancerLinQ, and the information will be offered to a wide variety of investigators from both industry and academia to help advance research.
For example, if a researcher has a question about epidermal growth factor receptor (EGFR)-mutated lung cancer, CancerLinQ Discovery would allow that researcher to generate a subset of records of patients with EGFR-mutated lung cancer from the CancerLinQ database and then investigate the effect various therapeutic interventions on patients along with the adverse events they experienced. The goal is that the insights gleaned from this information will generate or expand new uses of existing therapies and propel the discovery of new ones. But CancerLinQ Discovery is not a vehicle a doctor would use to guide treatment decisions for individual patients.
Partners and Advisors
Please talk about the partnership with AstraZeneca and its role in CancerLinQ Discovery.
AstraZeneca is our Founding Enterprise Partner, but we plan to have multiple CancerLinQ Discovery partnerships. We want to build a community where people can learn together, share insights, and, ultimately, improve patient care. The details of our relationship with each partnership will vary, but our goal is these collaborations will help us frame the right questions to make sure we build CancerLinQ Discovery so it provides the answers that are valuable to improving care.
Let’s imagine that a collaborator has a specific question. We can make sure that the CancerLinQ Discovery database has what it needs to answer that question, or if the database doesn’t have that information and can’t provide the answer, we can let collaborators know and save them time and resources.
We expect other Enterprise Partners—for-profit companies that have agreed to form a long-term strategic relationship with CancerLinQ LLC—to sign on. They will be working with us toward achieving a shared mission of developing a rapid-learning system that helps to improve the quality of patient care.
Along with others, these Enterprise Partners will be part of a diverse advisory group made up of various stakeholders, including physicians, patients, researchers, payers, policymakers, and perhaps donors or other stakeholders in the health-care industry. This Discovery Advisory Group will provide guidance to the management of CancerLinQ Discovery.
What progress has been made in the development of CancerLinQ?
There are now over 1.5 million patient records in CancerLinQ’s database, with 78 oncology practices having signed agreements to participate and contribute data. Of course, one practice can be small, with 1 or 2 physicians, or it can be a collection of many offices across a large geographic area, so those 78 practices constitute over 2,000 doctors who have signed up for CancerLinQ. I want to emphasize that not all of those 1.5 million patient records have been fully ingested into CancerLinQ, a process we call “data onboarding.” So far, only about half of the records from these practices have been fully “onboarded” into CancerLinQ but we are working quickly and the number is growing weekly.
Is CancerLinQ being tested to see how well it performs in reaching concordance with physicians on the best treatment options for patients?
No, it is not. That is a very good outcomes question, and it is exactly the kind of information we hope to deliver someday with CancerLinQ. In fact, our hope, as we move into a new era of payment not just for quantity of care but quality of care, is that soon this is the type of information that can be efficiently obtained through CancerLinQ.
When will ASCO officially launch CancerLinQ?
CancerLinQ has launched, and physicians are using it now to answer specific questions, but I say this cautiously because the information in the database is far from perfect even as it is rapidly growing. CancerLinQ is a rapid-learning system that aggregates and analyzes real-world cancer data, but the data are only as good as the information recorded on patients’ medical charts. Physicians have a lot of pressures in their day-to-day professional lives. Getting enough high-quality information into a patient’s chart to deliver good care is one thing. Getting precise, high-quality information into a patient’s chart to make CancerLinQ useful to the physician, to researchers, and for meaningful quality of care assessments, is another matter. We will get there but not overnight!
For example, we anticipate that as we deliver feedback to providers about the gaps we see in medical records, they and perhaps electronic health record vendors will have the ability to think about workflow and processes that will allow their recordkeeping to improve (from the perspective of CancerLinQ).
Are oncologists charged a fee to utilize CancerLinQ?
No, we onboard oncologists’ patient data for free. If oncologists want to access CancerLinQ, which we hope they do, we make it as easy as possible for them to do so. ASCO sends a technical support team to the physician’s practice and hooks up his or her electronic record system into the CancerLinQ database, and we intend to deliver products and services to oncologists without a fee for now.
It is conceivable that in the future, that model could change depending on how the products and services evolve, but right now we are planning on this no-fee model. Being able to maintain that no-fee model is partly why we have Enterprise Partners for CancerLinQ Discovery—so we can have an alternative source of revenue to make this program sustainable.
CancerLinQ is an unprecedented and ambitious undertaking for a professional society to pursue, and despite our excitement and enthusiasm I think we have to be careful not to overpromise on its capability. Nevertheless, what we anticipate happening is that the quality of electronic medical recordkeeping will continue to improve, in part from the pressure of having this kind of rapid-learning system visible, and then its utility will increase. I think there is a virtuous cycle ahead for us.
Our dream is that CancerLinQ will help oncologists not only deliver higher-quality care for their patients, but practice in a way that is even more enjoyable for them, because CancerLinQ will minimize some of the burdens that physicians currently face. In an ideal future state, CancerLinQ will help oncologists with their continuing education, protocol management, and quality-care assessment, which will be important in the years ahead.
We see CancerLinQ and Cancer-LinQ Discovery as an ambitious but critical offering to help oncologists take better care of patients and to contribute to better outcomes for patients. I imagine oncologists of the future will wonder how we practiced without it! ■
Disclosure: Dr. Hudis is Chief Executive Officer of ASCO and Chair of the CancerLinQ LLC board.