ASCO has completed the first phase in developing several sets of interoperability standards for cancer care data and overcoming the widespread inconsistencies that currently limit secure sharing of information between providers, patients and researchers. The first standard, the Breast Cancer Treatment Plan and Summary Standard and Implementation Guide was announced at ASCO’s 49th Annual Meeting and will be published later this summer. The standard was discussed at a briefing where the Society also demonstrated the prototype of CancerLinQ™, ASCO’s health information technology (HIT) initiative to achieve higher quality, higher value cancer care with better outcomes for patients.
“This data standard will allow oncologists to share data during care, but also provide a summary for primary care physicians and patients after treatment ends. ASCO and other oncology organizations can and will use it as a foundation for creating additional standards,” said ASCO President, Sandra M. Swain, MD, FACP.”ASCO’s work in CancerLinQ, data standards and other HIT initiatives are based on the fact that future cancer care will depend on the ability to electronically share clinical information between practitioners. However, electronic health records (EHRs) often contain data that cannot easily be shared among physicians or contributed to quality improvement, public health reporting or analytics. In addition, the current exchange standards do not include disease-specific templates needed for continuity of cancer care.
ASCO hosted a Data Interoperability Standards Summit in February of 2013 to encourage collaboration in developing standards that will overcome these barriers. The Society selected adjuvant treatment for breast cancer as the focus for the first oncology standard. The draft standard was approved by open ballot through Health Level Seven International (HL7®), an accredited Standards Developing Organization (SDO) and the leading global SDO focused solely on healthcare, in May and the standard is expected to be published by HL7 and ready for implementation in summer of 2013. Major elements covered with the standard include:
- Diagnosis (site, histology, and stage)
- Pertinent patient health and comorbidity information
- Surgical history and pathology
- Goals of therapy
- Chemotherapy regimen and dosage
- Duration of treatment and number of cycles
- Major chemotherapy side effects
The Society’s work in data standards is in conjunction with the development of CancerLinQ, a learning computer network that will collect and analyze cancer care data from millions of patient visits, together with expert guidelines and other evidence, to generate real-time, personalized guidance and quality feedback for physicians. ASCO recently completed a breast cancer-specific prototype, which demonstrates the feasibility of a HIT-based learning health system, which the Institute of Medicine has defined as critical to the future of the of the nation’s healthcare system.
“CancerLinQ is being designed to improve cancer care even before approved standards are in place, although we recognize their necessity in ensuring that future oncology care keeps pace with technology,” said ASCO President-elect Clifford A. Hudis, MD. “ASCO has taken a leadership role in this area, and we hope to encourage even more collaboration and participation from additional organizations in this effort.”
Future areas of focus for ASCO’s data standards initiative will include developing standards for other specific cancers, for additional types of data such as patient-entered information, or for additional cancer care priorities, such as survivorship. As there are advances in molecular data and biomarkers, ASCO hopes to collaborate with other specialty stakeholder organizations to develop standards that include the complete oncologic treatment history for a patient diagnosed with cancer.
CancerLinQ is supported by the Conquer Cancer Foundation of the American Society of Clinical Oncology. CancerLinQ is a project of ASCO’s Institute for Clinical Excellence. For more information, please visit the CancerLinQ page.