ASCO Linking E-Health Data To Promote Real-Time Personalized Cancer Care

The American Society of Clinical Oncology takes the first big step toward a real-time learning network by aggregating data culled from electronic health records, to provide physicians, patients and others with up-to-the-minute evidence on how best to treat cancer.

The American Society of Clinical Oncology has taken a significant step in demonstrating how electronic health records can contribute to a learning health care system with the recent demonstration of its CancerLinQ electronic information network.

CancerLinQ is an ACSO initiative under which the association is building an electronic network that will allow oncologists, patients, researchers and other stakeholders to cull data from EHRs for various purposes. For physicians and patients, the network will help guide personalized treatment by allowing EHRs to be queried in an effort to learn what the best treatment options will be for a given patient based on real-world experiences and real-time analysis of data captured in electronic records. Researchers ultimately will have the ability to query the system to test hypotheses based on existing data as well as to use it prospectively in the clinical trial setting.

ASCO President Sandra Swain, speaking at a March 27 press conference demonstrating CancerLinQ’s proof-of-concept, described it as a “knowledge-generating computer network” that will “compile and analyze data from millions of electronic health records, millions of data points within those records, in any format, coming in in real time. It will assemble the latest research, guidelines and other expert knowledge under clinical decision support and then feed [that knowledge] back to the physician so they can use this new evidence as it becomes available to treat patients in their office and enable the physician to deliver personalized point-of-care guidance for every patient by drawing on the best expert evidence and on the analyses of many other patient experiences.”

The system uses a combination of open source and proprietary software to take in data from EHRs and apply analytical tools to help provide oncologists with the evidence-based information. CancerLinQ is designed to be EHR-vendor non-specific. Part of the proof-of-concept work was to demonstrate that it could retrieve information from any EHR system in use today.

The organization, in addition to its own financing, took in $3 million in external funding late last year, including financial commitments from Susan G. Komen for the Cure, Helsinn Group and Roche’s Genentech unit to help with the proof-of-concept phase of the CancerLinQ initiative.

ASCO did not have a specific timeline for when it expects CancerLinQ to go live, but a spokesman for the organization said the full vision for the network involves different portals for different users – one for physicians (the focus of current development efforts and to be launched first), one for patients and one for researchers. EHRs are being seen as a research tool as they become more adopted, as well as a key component to delivering more evidence-based care in the post-health-care-reform environment (Also see "Health IT The Linchpin To Health Care Reform – Bipartisan Policy Center" - Pink Sheet, 13 Jun, 2011.). Swain said she hopes that once CancerLinQ goes live, others will follow the lead for different disease states.

EHRs have been seen by HHS as a means of linking cancer patients with clinical trials, and the agency is looking at the meaningful use standards as a way of encouraging this. And while the cancer research community sees this as good, they recognize it could be a challenge to implement (Also see "Cancer Research Group Calls For EHR Link To Clinical Trial Databases" - Pink Sheet, 4 Feb, 2013.).

An IT Revolution In Cancer Care

Swain said that we are “on the cusp [of] an information technology revolution in cancer care, which really could have just as great an impact as the biology that we’ve learned.”

Key to that revolution is the fact that oncologists are adopting EHRs, Swain cited the ASCO 2013 National Census of Oncology Practices that shows 60.8% of oncology practices have advanced EHRs, with 31.1% either using a basic EHR or planning to implement one within six months and only 8% indicating no plans to adopt and use EHRs.

“This is a really great advance over the last several years,” she said. “At ASCO, we really wanted to harness these advances and transform cancer care and research.”

Another reason for the CancerLinQ initiative is that it will offer a way for exponentially more cancer patients to contribute to the knowledge base compared to the relatively small number participating in clinical trials.

“One stunning statistic is that only 3% of patients now [participate in] cancer clinical trials,” Swain said. “It’s very, very small. So that means that’s the data that we use for our evidence-based guidelines. The 97% of people do not go on clinical trials, so we lose any access to that information.” CancerLinQ will “help us unlock that 97% of data that’s currently beyond our reach.”

To test the proof-of-concept, ASCO collected breast cancer data and was hoping to get data from 30,000 EHRs. But the number of volunteer records used in the prototype demonstration went well beyond that, ASCO President-Elect Clifford Hudis said during the press conference.

“That is a takeaway point, which means that our community is very supportive of this effort and very willing to provide their records for us,” Hudis said.