“Shoppers have Amazon. Students have Google. Oncologists will have CancerLinQ®”
The American Society of Clinical Oncology (ASCO) puts on an annual meting that has become one of the largest cancer research conferences in the world.
The American Society of Oncologists (ASCO) was created in 1964 by seven cancer physicians with a single purpose: to improve the care of people with cancer. ASCO has grown from original seven members to nearly 45,000 today representing over 120 countries. Its foundation, Conquer Cancer supports ASCO’s many programs and activities, including cancer research, educational opportunities for oncology professionals, patient and caregiver education, the annual meeting and more.
CancerLinQ is one of ASCOs’ most ambitious initiatives. The program was created to give oncologists a robust quality monitoring system that collects and analyzes data from all patient encounters so that they can deliver to patients the highest possible quality of care. CancerLinQ is enabling ASCO to build on their global network of oncology expertise to help support and drive cancer research for eventual cures.
CancerLinQ in just a handful of years has organized and accumulated 1.2 million patient electronic health records (EHR). Moreover as reported recently by ASCO that CancerlinQ has received data from 48 healthcare institutions to help them improve care for patients. They have accumulated a “treasure trove” of data for investigators probing any number of research questions such as how expensive cancer drugs work for patients in the real world reports Medscape.
- 2010: ASCO board began to research the use of big data and learning systems with the release of the Institute of Medicine (IoM) report A Foundation for Evidence-Driven Practice: A Rapid-Learning System for Cancer: A Workshop on 2010.
- 2012: ASCO developed a prototype effort that was successfully released in 2013. It included a database of more than 170000 de-identified breast cancer patients from oncology practices around the United States. ASCO established data governance and advisory committees.
- 2015: SAP (German ERP and data software company) and ASCO partnered to develop the big data software platform that powers CancerLinQ, supported by SAP HANA big data platform. They also sought to make CancerLinQ a continuous learning platform.
- 2016: CancerLinQ surpasses one million patient records. The number of participating practices continues to grow, development and research is ongoing.
- 2017: CancerLinQ announces long-term partnership with the US FDA—target is to examine newly approved cancer therapies and real-world use.
- 2018: CancerLinQ announces deals with Concerto HealthAI and Tempus to accelerate its joint research with the FDA.
Some Ethicists are Concerned
Medscape reports that some ethicists have concerns about the fact that CancerLinQ is allowing companies to sell access to data after they have deidentified the patient information without asking the actual patient for permission. As Medscape reported, Robert Field, PhD, MPH, JD, a professor of law and public health at Drexel University noted “I think that the ethics of profiting off of someone else’s information is dicey and at the very least the patient should go in with their eyes wide open , and that requires informing them.”
It is reported that the patients that are presently in the CancerLinQ database did not consent to be listed there. Again the database’s core functions are quality measurement and improvement and other healthcare operations which means, according to the Medscape article, that under HIPAA patients do not need to offer their consent.
Kadija Ferryman, PhD, a researcher at the Data and Society Research Institute, New York, NY which focuses on the impact of technology on society quoted “Just because something is legal doesn’t mean it is ethical and this is a really good illustration of that” and “Even though they are acting within regulatory guidelines, something about this doesn’t feel right.”
CancerLinQ Commercial Partnerships
Apparently back in December, 2019 CancerLinQ has inked a couple commercial partnerships with ventures that turn clinical records into searchable datasets so that participating providers can assess how they can provide optimal cancer care. The two private concerns including:
They both pay CancerLinQ a royalty fee to offer their own customer data and products from a deidentified database for research—CancerLinQ Discovery. Through the agreements, both Tempus and Precision HealthAI are to curate data into high quality datasets to be used to improve quality of cancer care and for research—CancerLinQ Discovery—a new service that provides access to high-quality, de-identified datasets for non profit organizations, healthcare providers, academic researchers and government agencies. Both Tempus and Precision HealthAI will bring these de-identified datasets to industry partners to produce practical applications such as targeted therapies, more efficient clinical trials, and data-driven analyses to help determine which therapies are producing the greatest benefit. Royalties from this license will support ASCO’s CancerLinQ initiative.
CancerLinQ Sponsors and Collaborations
CancerLinQ is a big data project aimed to rapidly improve the overall quality of cancer care. They purport to “unlock real-world patient care data from millions of electronic health records, and securely process and analyze the data to provide immediate quality feedback and personalized insights on a scope previously unattainable.” They have been signing up big-time sponsors (funding) including:
- Cancer Treatment Centers of America
- Pfizer Oncology
- Lilly Oncology
- Raj Mantena, RPH
- Susan G. Komen
- Chan Soon-Shiong Family Foundation
- Boehringer Ingelheim
The CancerLinQ train has left the station. It is on a mission to bring all electronic data collected from everyday care into one rapid learning network. More and more researchers discover CancerLinQ to do the following:
- Measure and benchmark quality of care
- Unlock, assemble, analyze an de-identify cancer patient medical records
- Provide guidance by identifying the best evidence-based course of care
- Uncover patterns to generate knowledge
With CancerLinQ Real World Evidence researchers increasingly can:
- Generate hypothesis from observational data (e.g. off label use, risk stratification, etc.)
- Determine patterns of care
- Undertake post-market toxicity assessments
- Determine cohort with frequency of target population
- Identify cohort assembly and location of target population
- Conduct registry-driven randomized trials
- Undertake comparative effectiveness research
- Collective and utilize patient reported outcomes
Researchers are increasingly benefiting:
- Search for diagnostic codes
- Pericarditis, etc.
- Search for biomarkers
- Troponin T or troponin I
- AST or LDH (non-specific in ca population)
- Search for new drugs
- ACE inhibitors
- Beta blockers
Moving forward CancerLinQ’s collection of data across a wide distribution of oncology practices will provide insight into real-world practice of oncology. The platform, conceived to leverage the morphing landscape of electronic health records, are now pervasive in hospitals and health systems as a consequence of HITECH ACT (ACA) and consequently, ASCO’s subsidiary will continue their mission through growth, adaption, advocation, integration and discovery.