Cancer organizations reveal ways to control and use health information technology

As electronic commerce has become the way of the world over the past few decades, every business interaction results in information being collected on how consumers behave. In 2010, Google CEO Eric Schmidt said that our society now creates as much information every two days as we did from the dawn of civilization up until 2003. All that so-called “big data” can be overwhelming in some ways, but when harnessed effectively it can be used to make widespread improvements in products and processes.

In most industries, the information gathered over the past decade has led organizations to make changes in their operations. Retailers can now send customers coupons for the products they regularly purchase, and other service providers have tweaked their services and the way they interact with patrons in order to improve customers’ experiences.

As electronic information has quietly transformed the way most industries operate with the public, the field of medicine has “mostly missed that curve, for many good reasons,” says Cliff Hudis, M.D., president of the American Society of Clinical Oncology (ASCO) and chief of breast cancer medicine service at New York’s Memorial Sloan Kettering Cancer Center. While medical practitioners must remain vigilant about protecting the privacy of their patients, there are “also many good reasons” for using the data they collect to improve care, Hudis says.

Organizations like ASCO and Sarah Cannon, HCA’s cancer enterprise headquartered in Nashville, Tennessee, are capturing the wealth of electronic patient information available to improve clinical outcomes across the board.

Harnessing Data

Approximately 3 percent of cancer patients participate in clinical trials and, because those trials are heavily documented, usually digitally, patient care is available for ongoing study. However, 97 percent of cancer care is either recorded in paper files or “unconnected servers that are not maintained for ongoing learning,” Hudis says. As a result, researchers and care providers know very little about the experiences of most cancer patients.

ASCO is on a mission to correct the status quo with its CancerLinQ program, a health information technology initiative that aims to achieve higher quality and higher value cancer care with better outcomes for patients. Last year, ASCO completed a prototype of the project with breast cancer patients. While the pilot project intended to assemble patient information for 30,000 breast cancer patients, “we received information for more than 177,000,” Hudis says.

With that information in hand, ASCO is building the CancerLinQ system and hopes to launch it by this year. The system will be a health IT platform that will collect and analyze cancer care data from millions of patient visits, and use expert guidelines and other evidence to offer real-time, personalized guidance and quality feedback for physicians. By unlocking the wealth of information available through the experiences of cancer patients across the country, CancerLinQ “will allow us to learn from every patient,” Hudis says. “Practitioners will be able to do more effective clinical trials, facilitate drug approvals and strengthen the body of knowledge we have on treatment success.”

The CancerLinQ prototype includes anonymous data from 100,000 patients with breast cancer who were treated at leading cancer care institutions around the United States. It reflects more than a year of formative work, including consultation with the oncology and IT communities; efforts to improve oncology data standards; and extensive technology and legal analysis. ASCO’s intention is for the project to demonstrate that such a system is feasible and provide lessons about the technological and logistical challenges involved in full-scale implementation, Hudis says.

At Sarah Cannon, big data also is being used to create electronic genomic profiles of patients, which often include over 10 gigabytes of raw data per patient, says Andy Corts, chief information officer for Sarah Cannon. These profiles are used to identify the type of tumor and the genetic mutation that is causing the growth.

“Sarah Cannon uses genomics to pre-screen potential candidates for inclusion in early-phase clinical trials,” Corts says. “By using the genomic profiles of patients, Sarah Cannon helps physicians make treatment decisions. We also help oncologists match them with relevant targeted therapeutic options and, more often than not, with clinical trials.”

“As we aggregate more data, we will have greater insight into the best treatments for our patients.” — Andy Corts, chief information officer for Sarah Cannon

Overcoming Challenges

Collecting and taking control of the reams of available healthcare data is not without challenges. But a variety of information technology providers are now available to help healthcare organizations determine what data they can use, in what formats, and what systems can be used to organize and make the data useful.

To build its CancerLinQ prototype, ASCO determined several specific functions its system would need to be able to do, including collect cancer care data in any format—directly from electronic health records as well as from other sources. Once the data was collected, ASCO wanted to be able to use it for clinical decision support, generating individualized guidance on the care of any given patient with breast cancer based on automated, machine-readable versions of ASCO’s expert breast cancer guidelines as well as on the collective experiences of similar patients.

Finally, ASCO wanted its system to allow practitioners to explore its extensive database of information on the care of patients with breast cancer to identify real-world trends and associations and new hypotheses for research, and to provide immediate feedback on physicians’ performance against ASCO’s 10 quality measures.

After establishing these goals, ASCO linked together several open-source IT applications. Together, they encompass CancerLinQ’s planned core functions.

In addition to the challenges involved in developing a system that works, capturing and channeling the lessons of big data can be difficult because of the constant changes and new information involved.

“Genomics is an emerging field so there are a lot of new technologies, new players and FDA regulations,” Corts says. “Given that it is so new and the opportunities are so vast, we’re just starting out on a journey that we believe will transform cancer care. As we aggregate more data, we will have greater insight into the best treatments for our patients. It’s an exciting time.”

Reaping Benefits

While utilizing the reams of patient information available is a new, uncharted territory for most healthcare organizations, making the effort can result in benefits for the entire healthcare community—making work more efficient and predictable for staffs and improving care for patients. In fact, when the right systems are in place, making the most of already available data doesn’t even have to require a lot of extra work.

For instance, ASCO’s CancerLinQ prototype accepts data in any format, making it easier for physicians to participate and more efficient for staff to contribute data.

By drawing on the ever-growing pool of reliable information about cancer patients, the CancerLinQ program promises to improve care for other cancer patients. “With a learning health system like CancerLinQ, we’ll be able to advance the treatment and prevention of cancer simply by caring for our patients,” Hudis says. “The prototype is a major step toward that vision. Although we have years of hard work ahead of us, it’s now clear that we have the ability to collect data and provide feedback enabling the delivery of cutting-edge, state-of-the-art care to patients everywhere.”

At Sarah Cannon, the use of big data has been successful because of its strong relationships with other organizations dedicated to the same goal of harnessing data for patients’ sake. “We are very lucky to have the scale of HCA as a platform and to have great partnerships with physicians, labs, pharma companies and technology vendors to bring this offering to our patients,” Corts says. “Partnerships and collaboration are key to overcoming the challenges.”

Share Email
, , ,