Aug 18, 2016
By Shira Klapper, Senior Writer
When Vice President Joe Biden addressed attendees at the 2016 ASCO Annual Meeting, he spoke about the Cancer Moonshot Initiative—the Obama administration’s ambitious program to widen the reach of cancer therapies and improve the prevention and early detection of cancer. Invoking the Meeting’s theme of “Collective Wisdom,” the Vice President stated that, fortunately, we are at a moment in time when the Moonshot goal has the potential to become a reality, as researchers from across disciplines are realizing the importance of coming together to pool their knowledge—much like scientists in the 1960s came together to realize the fantastical dream of sending humans to the moon.
“The good news is that today, oncologists and cancer researchers realize that they can’t [find the cure for cancer] alone,” said Vice President Biden. “. . .We’ve reached an inflection point, in my view, in the fight against cancer, where you are combining diverse disciplines, unlike you did even 10 years ago—virology, immunology, protonics, genomics—all offering a profound promise that wasn’t there even 5 years ago.”
According to Vice President Biden, the technologic tool that will enable the sharing of vast amounts of information is big data, the ability to use computers to aggregate and analyze billions of pieces of data in order to discern patterns and trends in a way that transcends traditional human computation.
Fortunately, ASCO has been on the big data case for years.
The Vice President’s call to action of “harnessing the collective wisdom of all the disciplines to improve the lives of patients” is one that ASCO leaders anticipated back in 2011, when they envisioned a data-driven rapid-learning system for oncologists. That vision became CancerLinQ™, a national initiative that allows cancer care providers to improve the quality and value of care by analyzing millions of de-identified patient records to deliver high-quality, personalized care to patients with cancer and cancer survivors. Indeed, in his speech, Vice President Biden spotlighted CancerLinQ, along with other groundbreaking data-aggregating initiatives, such as the National Cancer Institute’s Genomic Data Commons.
ASCO CEO Clifford A. Hudis, MD, FACP, FASCO, explained how CancerLinQ is a key factor in helping to realize the Cancer Moonshot Initiative’s goals.
“One of the goals of [the] Moonshot is to break down silos and share existing knowledge and new information more freely. When fully functional, CancerLinQ will directly address this challenge by helping our community learn from everyday practice and share real-world data to speed the development and dissemination of the latest information and best treatment approaches,” Dr. Hudis said.
CancerLinQ recently reached a major milestone as it contracted with 65 vanguard practices (as of July 2016) that will bring the tool to life. These vanguard practices bring more than 1,000 providers and 750,000 patient records into the CancerLinQ fold. An additional 250 practices are poised to join in the coming year.
CancerLinQ captures data from the 95% of patients not on clinical trials
Currently, information on individual patients with cancer is kept in separate databases within each practice across the nation. The exception to this rule is the shared data that come from clinical trials. However, only 4% to 5% of patients with cancer participate in clinical trials; data on the other 95% of patients are locked up in metaphorical silos. CancerLinQ seeks to provide the key to unlocking these silos by de-identifying and aggregating patient data from across the country, thus uncovering patterns and insights that will improve patient care. On the individual patient level, doctors will be able to enter in patient characteristics, including age, symptoms, and genomic type, and receive feedback on how patients with similar characteristics are being treated across the country.
Robin T. Zon, MD, FACP, FASCO, a medical oncologist at Michiana Hematology, PC—one of the 65 vanguard practices—described how CancerLinQ will enable her practice to improve care for patients with cancer.
“On the individual patient level, as providers we currently make recommendations for interventions based on a small number of individuals participating in clinical trials. However, our patients very often differ from research participants and we have no other reliable data on which to base our recommendations. The promise of CancerLinQ is to allow us to learn from patients and providers beyond clinical trials and discover if we are treating our patients in the best manner possible,” Dr. Zon said. “We will now be able to answer a question so often asked of us by the patient: ‘How did patients like me do on this treatment?’ For my patients’ sake, I look forward to using CancerLinQ to learn what I have been doing correctly, as well as to learn what needs to be changed or further explored so I can enhance the quality of my patients’ care and experience during their cancer journey.”
Dr. Zon also noted that CancerLinQ will allow her and her colleagues to stay at the forefront of oncology practice: “CancerLinQ’s goal of harnessing big data analytics to improve quality of care for our patients not only complements the mission of my group practice, but is in alignment with the stated goals promoting high-quality care under the Medicare Access and CHIP Reauthorization Act [MACRA].”
A day in the life of CancerLinQ
The following vignette, which was part of the Annual Meeting address given by ASCO Immediate Past President Julie M. Vose, MD, MBA, FASCO, about a hypothetical patient, “Mary,” illustrates the capabilities that CancerLinQ can deliver to providers on a day-to-day basis to guide and enhance patient care.
Access patient data in a quick and intuitive way
“Mary” is a 65-year-old woman who has been diagnosed with diffuse large B-cell lymphoma, with stage IIIA disease. Mary’s doctor, Dr. Smith, knows her patient has previously been seen at another institution and wants to gain a clear understanding of Mary’s care up to now. Fortunately, Mary’s previous place of care participates in CancerLinQ, so Dr. Smith goes onto CancerLinQ and easily accesses a clear, visual, longitudinal timeline of Mary’s previous care; Dr. Smith thinks to herself how challenging it was to piece this information together before CancerLinQ.
Uncover insights and trends to improve patient care
Dr. Smith then enters Mary’s demographic and clinical information into CancerLinQ so she can quickly and easily receive a report describing published guidelines for Mary’s particular disease as well as a report of how oncologists around the country are treating patients with Mary’s particular characteristics. Based on this information, Dr. Smith creates a personalized treatment plan for Mary that draws on up-to-date information and evidence-based research in the field.
Receive ongoing quality metrics
As Mary goes through treatment, Dr. Smith wants to ensure that she, as the oncologist, and her team, which includes nurses, nutritionists, psychologists, and other members of the auxiliary professions, are continuously providing Mary a level of quality care that reflects current guidelines and best practices. CancerLinQ enables Dr. Smith to receive ongoing quality assessment reports providing real-time clinical quality metrics and analysis and highlighting opportunities for improvement.
Gain insight into your patient population
Dr. Smith works at a cancer center in a mostly rural state, and patients come in from a large area that includes towns and cities with varying levels of resources. Dr. Smith wants to use the data in CancerLinQ to assess whether a history of previous colonoscopy differs by region across the hospital’s catchment area. She knows that the tool will quickly and easily provide her the feedback she’s seeking, identifying geographic locations that are underserved and might benefit from an intervention.
One point of data, part of a greater whole
Mary has benefited from the aggregated data in CancerLinQ, but she also knows that data from her cancer treatment is now part of an enormous database that is helping to uncover trends to help future patients with cancer.
Vanguard practices take CancerLinQ live
The 65 vanguard practices that will help to bring CancerLinQ data to life come from all corners of the nation’s oncology landscape, from Alaska Women’s Cancer Care in Anchorage to Jefferson Cary Cancer Center, in Caribou, Maine; from New Mexico Oncology- Hematology Consultants, Ltd., in Albuquerque, to Hematology Oncology Associates of Brooklyn, in New York.
Uploading all of a practice’s electronic health records (EHRs) into CancerLinQ can be challenging and takes time. To help with this complex process, CancerLinQ assigns an implementation team to work with the practice to develop and execute an implementation plan, timeline, and technical approach for uploading the data.
Keith Thompson, MD, of Montgomery Cancer Center, explained that the implementation team “came in and analyzed the way we interact with our own EHR, asked questions about how data are stored, and then analyzed our data before drawing them into the system.” That process, he said, took several months and a lot of hard of work, but “they made it easy for us.”
Developing a data platform
In 2013, the CancerLinQ team completed a prototype of the tool. Since that time, ASCO has established data governance and advisory committees to help with the design and implementation of the system. Another crucial turning point for CancerLinQ occurred in January 2015, when ASCO announced it would collaborate with technology company SAP to create a big data platform based on SAP Connected Health, which is built on the SAP HANA® platform—a data management system that allows analysts to query large volumes of data in real time.
One of the major challenges in aggregating data from multiple practices is the process of mapping data that have been stored in a variety of EHR systems and that use different formats for recording and classifying data. An eventual goal of CancerLinQ is to work with the oncology community and EHR vendors to standardize the way data are described, thus making systems more interoperable.
Collaborations with national informatics experts
In June 2016, CancerLinQ announced a collaboration with the Cancer Informatics for Cancer Centers (CI4CC), a nonprofit organization that provides a forum for senior informatics leaders and chief data scientists at the nation’s NCI-designated cancer centers and other major medical and research institutions.
Debra A. Patt, MD, MPH, MBA, a medical oncologist at Texas Oncology and Editor in Chief of JCO Clinical Cancer Informatics, a new ASCO journal that will launch in 2017, believes that the CancerLinQ-CI4CC collaboration will be quite beneficial.
“CancerLinQ and CI4CC will act in collaboration, allowing ASCO to facilitate interaction between many of the leading clinical, genomics, and biomedical informaticists, academicians, and data scientists in the country currently working with cancer informatics, allowing them to learn from one another and help the field advance faster,” she said.
CancerLinQ will work together with CI4CC and the oncology community on joint initiatives to engage informatics leaders nationally, exchange best practices, hold forums, identify strategic opportunities, and help accelerate the transformation of patient data into meaningful insights on care. One of the key initiatives of the collaboration will be the formation of an informatics advisory council for CancerLinQ, which will include leading experts from cancer centers across the country. In addition, as part of this collaboration, a CancerLinQ representative will be assigned to a CI4CC Leadership Board.
2017 to bring the first wide-scale analysis of CancerLinQ data
During the 2015 ASCO Annual Meeting, attendees were able to view a demonstration of CancerLinQ using mock data. A year later, during the 2016 Annual Meeting, attendees were able to see how the system runs with (de-identified) real-world data. CancerLinQ momentum is moving forward at an exciting pace, and it is expected that by late 2016 or early 2017, enough anonymous and aggregated data will be entered into CancerLinQ to allow searches of the entire system. When that happens, ASCO will have moved the entire cancer care community one step closer to realizing the Vice President’s vision, as he described it during his speech at the 2016 Annual Meeting:
“What’s required today extends beyond any individual or any individual discipline, beyond medicine itself. We have to use every weapon at our disposal if we’re going to meet our goal to help patients more than [oncologists are] even helping them today. . .This will require a lot more openness—open data, open collaboration, and above all, open minds.”
CancerLinQ is supported in part through the Conquer Cancer Foundation of ASCO, whose major supporters include Amgen; Astellas; AstraZeneca; Bayer HealthCare Pharmaceuticals, Inc.; Boehringer Ingelheim Pharmaceuticals, Inc.; Cancer Treatment Centers of America; Chan Soon-Shiong Family Foundation; Genentech BioOncology; HELSINN; Janssen Oncology; Lilly; Raj Mantena, RPh; Novartis Oncology; Pfizer Oncology; Thomas G. Roberts Jr., MD, and Susan M. DaSilva; and Susan G. Komen.