Earlier this year, the Institute of Medicine issued a consensus report on the importance of establishing a “learning health system” in the United States. The report recommends “a continuously learning health system that aligns science and informatics, patient-clinician partnerships, incentives, and a culture of continuous improvement to produce the best care at lower cost.”1

That concept is already beginning to take shape in the cancer community through a new rapid-learning system being developed by the American Society of Clinical Oncology (ASCO) called CancerLinQ. The system aims to gather and analyze millions of unconnected medical records from cancer patients into a central knowledge base that ultimately will connect oncology practices, provide real-time data to physicians for making treatment decisions, and measure practice quality and performance. Essentially, each patient's experience will inform those who come afterward, helping both patients and physicians to make better decisions at each point of care.

Breast Cancer-Specific Prototype

ASCO had their first meeting on the system about a year ago, says Amy Abernethy, MD, a Duke University medical oncologist and associate professor who serves on the CancerLinQ advisory board. “Getting something done is a much bigger task than just developing the technology,” she says. “In order to pull this off, you have to have the confidence for people to share information across numerous lines of competition,” she says. “ASCO needs to broker a lot of relationships.” Other areas to be addressed include the concept of data governance and determining which data should be collected and how. It is an enormous volume of information that will require review and multiple resources to accomplish, says Dr. Abernethy.

Toward that end, the organization currently is at work developing a prototype of a breast cancer-specific rapidlearning system. The prototype will use ASCO's breast cancer clinical practice guidelines and measures of its Quality Oncology Practice Initiative (QOPI) as the basis for both quality measurement and clinical decision tools. Data will be gathered from deidentified electronic health records of academic centers and oncology practices. “The No. 1 task of the prototype is to help physicians understand what it is and decide they want it in their clinic,” Dr. Abernethy says. “If you do it in a small enough environment, you can anticipate the pitfalls, deal with them, and build around them the next time.”

In addition, according to ASCO, the prototype will demonstrate a physician's ability to measure their performance against a subset of QOPI measures in real time, show how data can be captured from a variety of sources and aggregated through new methodologies, and demonstrate how data can be explored in novel ways and generate hypotheses about breast cancer.

ASCO has contracted with Sapient Corporation, a health care technology company, to develop the prototype. Dr. Abernethy anticipates that once the prototype is created, CancerLinQ developers should have enough information to develop models for additional cancers.

In addition to helping physicians improve their practices and overall patient care, the CancerLinQ system will enable data reuse for comparative effectiveness research and developing an understanding of how to improve practice guidelines. The National Cancer Institute (NCI) had hoped to accomplish a similar effort, but they were not able to compile the data because community practitioners were not their constituency, says Dr. Abernethy. “That's why ASCO's role in brokering relationships is so important,” she adds. “They are able to maintain the vast interest of the patients and community practitioners first so that research can naturally follow.”

Evidence-Based Cancer Research

At the same time, NCI is working to channel advances in health information technology (HIT) to improve cancer prevention, care, and research. The mission of its Health Communication and Informatics Research Branch (HCIRB) is to enable better communication and decision-making in the treatment of patients with cancer using new HIT.

HCIRB's Health Information National Trends Survey (developed jointly with the Division of Cancer Control and Population Sciences) routinely collects nationally representative data concerning individuals' use of cancerrelated information, including how they are using new technologies. Among its findings in 2012 were that 84% of the public believe their physicians are already using electronic health records whereas in reality only approximately 55% of physicians are doing so. That number has increased from less than 20% in 2009, when Title XIII of the American Recovery and Reinvestment Act, known as the Health Information Technology for Economic and Clinical Health Act (HITECH), was enacted, says Brad Hesse, PhD chief of the HCIRB. Among other provisions, HITECH provides $20.819 billion in incentives through the Medicare and Medicaid reimbursement systems to assist providers and organizations in the adoption of electronic health records.

HCIRB also is seeking to ensure that cancer scientists are not excluded as large commercial interests increasingly dominate the field of HIT. “Smoking cessation apps were developed for iPhones and iPads, but none of them had any evidence base around them,” says Dr. Hesse. The goal of HCIRB is to develop a translational pipeline for the information technology projects that they fund. As a result, they are seeking commercial-government partnerships to develop new technologies. They recently announced a program to accelerate the development and commercialization of consumer HIT products that translate the behavioral and communication science evidence base for the prevention and control of cancer and other chronic diseases.

Additional Studies Funded by the HCIRB

• A pilot study at Kaiser Permanente in Denver, Colorado, provides patients and physicians with prognostic information by demonstrating how other patients with the same condition (including lifestyle and comorbidities) respond to different therapies.

• A study at The University of Texas MD Anderson Cancer Center in Houston is exploring the use of Skype for providers to teleconference with patients with head and neck cancer who are at home to better monitor their symptoms.

The funding opportunity announcement will continue for 3 years and will fund up to $100 million in projects, Dr. Hesse says.


  • 1
    Institute of Medicine. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington, DC: National Academies Press; 2012.