TheAmerican Society of Clinical Oncology (ASCO) is building aground-breaking, knowledge-generating, information technology system calledCancerLinQ?which promises to transform virtually every aspect of clinical research and the care and management of patients with cancer. The new system is designed to advance the potential for many new breakthroughs in cancer care.

Over the last 50 to 100 years tremendous progress has been made in the care and management of patients with cancer. As a result of many scientific, medical and technological breakthroughs, patient survival and quality of life (QoL) have improved dramatically. Breakthroughs in diagnostics and radiotherapy, discoveries in molecular biology, new chemotherapeutic agents and initiatives towards personalized medicine have helped extend and improve the lives of many patients. Researchers believe that today, the potential for new breakthroughs is cancer care is greater than ever.

The challenge in care
Unfortunately, the significant challenges faced today may also limit the pace of progress. For example, only 3% of patients in the United States participate in clinical trials. This means that 97% of patients receive “standard-of-care” which does little to advance the collective knowledge of how to improve this cancer care. The information of these ‘Real world” patients is locked away in unconnected computer systems and paper files. [1] Another problems is that many cancers are now segmented and classified as “rare diseases” which results in an overwhelming amount of data and data types surpassing our ability to analyze. Also part of the problem is the development and adoption ofElectronic Health Records(EHR) and other Health IT systems designed to improve the quality and value of care, but because these systems are not always well-designed, they are only adding to an increase in administrative burden without improving care. However, the biggest problem is that patients with cancer are confronted with fragmented care that only complicates their lives and makes it impossible for medical professionals to draw meaningful insights.

CancerLinQ?, ASCO?s health information technology (HIT) initiative, is designed to achieve higher quality, higher value cancer care with better outcomes for all cancer patients.

CancerLinQ: Transforming patient care
CancerLinQ,developed byASCO?s Institute for Clinical Excellence andsupported by the Conquer Cancer Foundation,is 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.A recently completed breast cancer-specific prototype, demonstrated the feasibility of a HIT-basedlearning health system, which the Institute of Medicine has defined as critical to the future of the of the nation?s healthcare system.

The inclusion of CancerLinQ in the oncology practice is expected to result in higher quality and value of care with better outcomes for patients because it pairs the best available technology with medical expertise in cancer science. The developers further expect that the new standards will not only revolutionize cancer care, but also serve as a model for other areas of medicine.

The new system features a number of critical elements including real time data collection (accepting any cancer care related data, in any standard, directly from EHRs and other resources), clinical decision support (automated versions of clinical practice guidelines, quality measures such as QOPI, and other expert guidance to support individualized care of any given patient at the point-of-care), data mining and visualization (designed to explore the correlation between data and help identify and explore promising leads for ongoing clinical research), real-time quality feedback designed to help individual physicians improve the care they provide and reduce variations in the care offered to patients.

?CancerLinQ is being designed to improve cancer care even beforeapproved standards are in place, althoughwe 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.?

Unified Data Standards
Earlier this year ASCO also completed the first phasein developing several sets of interoperability standards for cancer care data and overcoming the widespread inconsistencies that currently limit secure information sharing of information. A prototype of the system was presented during ASCO?s 49thAnnual Meeting and the firststandard, the Breast Cancer Treatment Plan and Summary Standard and Implementation Guide will be published later this summer.

Realizing the Potential for Personalized Medicine
The new data standards proposed by ASCO are designed to unlock the potential of personalized medicine. ?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, 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.

The Data Interoperability Standards Summitheld in February 2013 encouraged the collaboration in developing standards that will overcome many of the barriers. ASCO selected adjuvant treatment for breast cancer as the focus for the first oncology standard. In May 2013 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 and the standard is expected to be published by HL7 and ready for implementation in summer of 2013.

Critical features
Based on current health information technology, it is possible to compile and analyze data from millions patient records in real time. HIT makes it also possible to assemble the latest clinical research, guidelines and other expert knowledge and update this information in real time. This large volume of data may reveal patterns which may ultimately result in the availability of new evidence. By providing this expert evidence and information as “point-of-care support ” to physicians, it will help deliver personalized medicine to each patient.

The data standards developed by ASCO include:

  • Diagnosis (site, histology, and stage)
  • Pertinent patient health and comorbidity info
  • Surgical history and pathology
  • Goals of therapy
  • Chemotherapy regimen and dosage
  • Duration of treatment and number of cycles
  • Major chemotherapy side effects

More information
The Society?s work in data standards is in conjunction with the development of 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.

[1] Margo Michaels,Executive Director and President, Education Network to Advance Cancer Clinical Trials (ENACT)The State of Cancer Clinical Research in the US and the World: Progress at the 3% Accrual Rate.Ruesch Center for the Cure of Gastrointestinal Cancers Annual Symposium: Fighting a Smarter War Against Cancer.November 30-December 1, 2012; Lombardi Comprehensive Cancer Center, Washington, DC. [Symposium]

Photo 1: Clifford Hudis, MD, Predident (2013 – 2014) of the American Society for Clinical Oncology. Photo 2: Sandra M. Swain, MD, FACP, Immediate Past President (2012 – 2013) of the American Society for Clinical Oncology. Photo Courtesy: ? ASCO/Silas Crews
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