Two years ago, the American Society of Clinical Oncology (ASCO) announced the launch of an initiative to build a big data platform, called CancerLinQ, as a database that provides oncologists with growing amounts of real-world cancer information. The CancerLinQ platform was designed to connect and analyze cancer data from electronic records to provide data to cancer providers in order to assist them with making more informed decisions about patient care. The CancerLinQ platform was co-developed with SAP utilizing the SAP Connected Health platform that runs on SAP HANA, a flexible, in-memory data management and application platform.
In October, CancerLinQ announced a significant milestone with more than 1 million patient records now in the system. Additionally, there are now 71 oncology practices in 39 states and the District of Columbia participating in CancerLinQ, representing more than 1,500 oncologists. The aim of this big data initiative is to enable cancer providers to improve the quality and value of care by analyzing millions of cancer patient medical records, uncovering patterns and trends, and measuring their care against that of their peers and recommended guidelines.
Recently, Healthcare Informatics Assistant Editor Heather Landi spoke with Robert Miller, M.D., medical director at CancerLinQ, about the progress, to date, to build the research data network. Miller, who is a board-certified medical oncologist and informaticist, also shared his perspectives about how CancerLinQ is helping to break down data silos, how big data initiatives can help move the needle toward better cancer care, and the continuing challenges that oncologists and informaticists face in this area.
What are some of the challenges that oncologists are facing that CancerLinQ was specifically developed to address?
The American Society of Clinical Oncology (ASCO) board of directors identified the fact that only a small percentage of adult cancer patients actually participate in clinical trials for their care [about 3 percent]. So what that means is that for 97 percent of cancer patients, they are receiving the best care as determined by their local oncologist, but that knowledge of what happens to them as a result of the everyday care experience is largely lost, because the data is trapped in electronic health records (EHRs), or in some remaining cases paper records. So, the problem that ASCO was hoping to impact was to try to make all these data interoperable, to allow learning to occur from the care experiences of every cancer patient. So, they came up with this idea of creating a database whereby EHR data would feed into a single, aggregated database, and it would have to be de-identified for privacy protections, and that database could then be accessed by the broader cancer community, or what they call a learning health system. ASCO wanted to build a learning health system for the field of oncology and that’s what we are doing.
Robert Miller, M.D.
As of today, CancerLinQ has 71 participating practices in the U.S., and the way the program works is that our technology teams and informaticists connect the EHRs at the back end to the CancerLinQ database through a direct software connection and then using either pull technology or push technology, the protected health information data is moved from the EHRs into the CancerLinQ database where it’s aggregated. There is an initial data dump at the time of connection, and then there’s nightly incremental updates, so the data is refreshed every single day. Several weeks ago, we had crossed the point where we had 1 million patient records in the data lake. These are not all processed records yet, but a million records that have been brought on board from a percentage of the 71 practices that are participating.
Who is able to access these patient records in the database?
Right now, as of today, access is restricted to the subscribing practices that are themselves contributing data to CancerLinQ. However, we are in the process of finalizing, probably in the next few weeks, the third-party access policy. From the very beginning of this whole initiative, ASCO has anticipated that this database would have great interest and value to the larger cancer community, and so, once those policies are in place, and it will probably be operational by the first quarter of next year, then really anyone, whether that’s an academician, government agency or a commercial interest, anyone with a legitimate interest in CancerLinQ data would have the ability to apply for access. There will be an approval process and the request will have to be consistent with ASCO’s mission and for the good of the cancer community, but we anticipate a broad swath of interested parties will start to use CancerLinQ in the not-too-distant future.
What does CancerLinQ enable cancer providers to do?
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