Groundbreaking Big Data Platform Can Improve The Quality Of Cancer Care

By David Delaney and Kevin Fitzpatrick

December 5, 2016 | “I believe it is now possible to end cancer,” said Vice President Joe Biden at a recent American Society of Clinical Oncology (ASCO) event. “But we have to realign the system and create a new paradigm to share data. We have to aggregate records, family history, lifestyle information, and clinical treatment data.”

Thanks to significant advances in recent years in fields such as genomics, molecular medicine, and immunotherapy, the battle against cancer has reached an inflexion point. We have now accumulated enough diagnostic and treatment data to change the course of cancer.

However, much of the collected vital cancer data—such as individual characteristics, genome data, treatment regimens, and even outcomes—is locked away in information silos at research centers and care delivery organizations. As a result, physicians are not able to leverage this latent institutional knowledge to drive better decisions. Physicians treating cancer patients have to rely on an uneasy blend of evidence-based medicine, traditional treatment modalities, and simple pattern recognition, extrapolating from cases the practitioner identifies as similar based predominantly on their intuition and experience.

While in the past we have not had the ability to process and analyze massive amounts of cancer treatment data, we are beginning to change that—and move the needle toward better cancer care.  Advanced technology solutions powered by rich datasets and high-performance, in-memory computing capabilities are connecting physicians to vast amounts of health data. By building platforms and networks that enable oncologists to harness and leverage the collective experience of entire organizations, systems, regions, and countries, physicians can make treatment choices based on real-world evidence from a broad group of cancer patients similar to the patient at hand.

AGGREATING AND UNLOCKING USABLE DATA

While oncology is an area rich with clinical trials, clinical trial patients are often poorly reflective of the broader population being younger, healthier, and less ethnically diverse than typical real-world patients.   The data that oncologists typically leverage for determining treatments are based on a tiny subset—only 3%—of clinical trial patients. This proportion is startlingly low, considering that more than 1.7 million people in the United States are diagnosed with cancer each year.

So, while results from clinical trials  are key components of clinical decision-making, the reality is that many real world patients would have not have met enrollment criteria for the study.  This is where the art gets added to the science as the clinician uses experience, judgment and intuition to decide the best course of action for a particular patient.  Until recently, this was the dominant reality.

However, with broad digitization of medical records and high performance computing we can now leverage real world data about similar, previously treated patients to better inform decision-making on a patient by patient basis. In addition, this information can be used to continuously learn from and improve results.

One organization leading the way in collecting cancer treatment results from oncologists is CancerLinQ, a wholly-owned nonprofit subsidiary of the American Society of Clinical Oncology (ASCO) established for the development and operation of the CancerLinQ platform. CancerLinQ is a health information technology (HIT) platform that is aggregating and analyzing a rapidly growing store of patient data in order to uncover insights and trends, and to benchmark physicians’ care against recommended guidelines and measures. It has been developed leveraging the combined expertise of ASCO’s 40,000+ members, representing all oncology sub-specialties who care for people with cancer.

With CancerLinQ, typical patients and their specific types of cancer are accounted for in the data warehouse. CancerLinQ will help unlock knowledge and value from the 97% of cancer patients not involved in clinical trials, to help clinicians deliver better, more data-driven decision-making based on real-world results from patients closely matched to the patient at hand.

PERSONALIZED INSIGHTS FOR INDIVIDUALIZED CARE

CancerLinQ provides the key to unlocking information in data silos by aggregating patient data gathered from across the country, thereby uncovering patterns and insights that can improve patient care. For the individual patient, doctors can enter search criteria of patient characteristics, including age, gender, ethnicity, comorbidities and genomic information, and see how patients with similar characteristics are being treated across the country.

As of October 2016, CancerLinQ has more than 1 million cancer patient records. In addition, 70 vanguard practices have signed agreements to participate in CancerLinQ, representing more than 1,500 oncologists.

CancerLinQ amasses structured and unstructured information coming from disparate electronic health record (EHR) systems. The format of each data element varies based on the source system, ranging from unstructured text to highly structured elements. An eventual goal of CancerLinQ is to work with the oncology community and EHR vendors to standardize the way data are described, making systems more interoperable and better able to exchange information.

The CancerLinQ system provides several unique features, including real-time monitoring and reporting of clinical quality measures. The platform also allows clinicians to make better use of EHR data through advanced data visualization capabilities. CancerLinQ runs on SAP Connected Health built on SAP HANA, an in-memory data management and application platform.

GOING BEYOND CLINICAL TRIALS DATA

Using data analytics to improve the quality of patient care is a relatively new concept for physicians, so we are constantly gathering user feedback on CancerLinQ. “On the individual patient level, providers currently make recommendations for interventions based on a small number of individuals participating in clinical trials,” says Robin Zon, MD, FACP, FASCO, a medical oncologist at Michiana Hematology, PC, one of the practices that have signed agreements to participate in CancerLinQ.

“CancerLinQ allows us to learn from patients beyond clinical trials and discover if we are treating our patients in the best manner possible,” she adds. “We will now be able to answer a question so often asked by the patient, ‘How did patients like me do on this treatment?’”

HARNESSING DATA, GAINING INSIGHTS

Initiatives such as CancerLinQ address the urgent need to break down barriers that impede progress in our fight against cancer. By analyzing patient medical records and using in-memory computing technology to uncover trends among millions of cancer patients—and sharing that knowledge—we can enable more data-driven decision-making.

All caregivers in the cancer treatment ecosystem charged with deciding on a course of treatment can get new insights in seconds, not years. CancerLinQ is already proving how organizations can come together and harness data to make better decisions that can improve cancer patient care.   As this initiative continues to expand and accrue more data, it will ultimately improve the lives of millions of people around the world.