June 2013 Edition Vol.11, Issue 6

CancerLinQ Proof-of-Principle Demonstrated at 2013 ASCO Annual Meeting

CancerLinQ Proof-of-Principle Demonstrated at 2013 ASCO Annual Meeting (continued)

Oncology Data Standards

Although CancerLinQ is designed to be “data agnostic,” and will not have to wait for new data standards for implementation, ASCO has been developing interoperability standards for cancer care data to improve data sharing among healthcare providers, researchers, and patients. The first standard, the Breast Cancer Treatment Plan and Summary Standard and Implementation Guide was announced at the 2013 Annual Meeting. The draft breast cancer standard was approved by open ballot through Health Level Seven International (HL7®), an accredited Standards Developing Organization, and should be ready for implementation later this year. The major elements include diagnosis, patient health and comorbidity, surgical history and pathology, goals of therapy, chemotherapy regimen and dosage, duration of treatment and number of cycles, and major chemotherapy side effects.

Outstanding Issues

There are many issues that remain to be resolved. Currently CancerLinQ uses ASCO quality measures determined from ASCO Clinical Practice Guidelines, and although these guidelines do not cover the entire oncology territory, Josh Mann, Associate Director, Oncology Technology Solutions, Quality and Guidelines, ASCO, noted that there are no arrangements with other content providers at this time. The full CancerLinQ system will have to de-identify data, but when full genomic sequencing becomes available, theoretically it could be used to identify patients. Dr. Hudis expected that by the time the full system is up and running, this problem will have been solved. Mr. Hauser noted that those data used to measure quality already fall under HIPAA and can be part of the system. A state-by-state legal analysis is in progress, and some state laws regarding health care data disagree with federal regulations, so CancerLinQ likely may roll out targeting some states first where the legal situation is clearest. ASCO is also looking at international data laws and how cancer is managed worldwide.

Who will have access to CancerLinQ also remains a question. Mr. Mann said that the current thinking is that CancerLinQ will be free to ASCO members. Because EHRs and CancerLinQ will be implemented at the practice level, if one provider in a group practice is a member of ASCO but the other members aren’t, it isn’t clear how this will be managed. Physicians will be able to log in and access their own data for their own practice’s purposes. Other access is likely to be restricted. CancerLinQ developers are still defining data government, and will have an as-yet-to-be-defined process in place to review data access requests. This may involve a panel of experts like that used to review a grant proposal. Researchers would have to apply to ASCO; ASCO could either do their study for them or give them access to data. Pharmaceutical companies would also have to prepare a research proposal for access to any data. Patients will have some tools available to them, e.g., to stay in touch with their healthcare team, report symptoms, and access treatment information.

Funding is also an issue. The prototype was funded by several million dollars from ASCO, primarily from the Conquer Cancer Foundation, and by donations from pharmaceutical companies, the Susan G. Komen Foundation, and private donors. Additional funding is needed to go forward, affecting how rapidly CancerLinQ develops.

Future Directions

Dr. Hauser said the CancerLinQ developers are hoping by 2014 to have something mainly geared at quality reporting that would use QOPI quality measures. Currently, practices in the US have access twice a year to compare their performance to these standards. QOPI is free to every ASCO member but requires manual chart extraction and manual entering into QOPI. The next goal for CancerLinQ is to have a version 1.0 live pilot within about 18 months that would encompass all tumor types and be available for a few dozen practices. Dr. Hauser expects that the version 1.0 CancerLinQ will be automatic in real time, and generate reports as a QOPI “replacement” algorithm.

George W. Sledge Jr. MD, Stanford University, who chaired the educational session on CancerLinQ, suggested the system might one day play a role in CME, automated recertification, exploring drug toxicity, and linking patients to clinical trials.

Mr. Mann said that over 400 demonstration of the CancerLinQ prototype were given at the exhibit booth, and that at one point there was a line of 20 people waiting to see the demonstration. He said the reaction was extremely positive, and that the international practitioners seem to be even more eager than those in the US to see the product developed. Mr. Mann hopes that the questions that come up in the next development phase should resolve rapidly. ASCO plans to publish its lessons learned—it has identified more than 60 so far—over the coming year, and will use them to inform its development of the full CancerLinQ system.

Pages: 1 2

Post a Comment

OBR Archives

To view previous issues of OBR green you can visit our archives. The entire library of OBR green articles is searchable.