As a regular readers of The ASCO Post know, ASCO is developing an exciting new health information learning system called CancerLinQ™, which will exponentially enlarge our understanding of cancer therapy far beyond what we’ve achieved with our system of clinical trials. Cancer clinical trials have led the way to countless new therapies; without them, cancer care would never evolve. Unfortunately, clinical trials are a woefully inefficient—and insufficient—source of information.
Everyone is aware of our dismal 3% adult cancer trials accrual rate, but it has been that tiny fraction of 3% of patients willing to participate in clinical studies that has allowed us to advance new treatments. What about the other 97% of patients treated for cancer? How can their treatment and outcomes add to our overall cancer wisdom? CancerLinQ promises to unlock the wealth of data stored in individual patient electronic health records and provide us with answers.
Outcome Information Tool
CancerLinQ is not a clinical trial, but rather, an outcome information tool designed to increase our understanding of cancer and its treatment and improve patient outcomes. CancerLinQ will also provide an individual oncologist seated in a local exam room access to outcome data from hundreds or thousands of patients similar to the one sitting in front of him.
A Brief History of CancerLinQ
ASCO has been discussing and refining this exciting concept since 2010, and its Board of Directors formally voted to go forward with the project in 2012. A proof-of-concept prototype was completed in 2013, with more than 170,000 de-identified medical records of breast cancer patients from four large cancer centers around the country and one oncology data analysis organization. The prototype showed that a full CancerLinQ system encompassing all cancers was feasible.
CancerLinQ was first presented to the cancer community in 2013 during a briefing at the National Press Club in Washington, DC, and a demonstration of the full system was presented to both oncologists and patient advocates at this year’s ASCO Annual Meeting. Both sessions received an enthusiastic response.
As news continues to spread regarding this huge venture, it is important that patients with cancer and the general public know about the great promise of CancerLinQ. It is also important to understand that CancerLinQ is an ongoing work in progress and to keep expectations in line with reality.
ASCO is now beginning to develop CancerLinQ with 15 vanguard oncology practices that are expected to contribute at least 500,000 patient records for research on treatment outcomes. The practices are diverse in geography, size, governing structure, and electronic health record systems.
While easy to explain, making the technology actually work is daunting. SAP, a global software company, is supporting ASCO staff in this monumental job. Both ASCO and SAP are working to meet the needs of patients at every juncture of care and are focused on protecting the privacy and security of patient information. I am among six patient advocates serving on CancerLinQ’s Patient Advisory Committee to help guide these efforts.
Establishing Patient Trust
CancerLinQ is for and about better care for patients with cancer. Maintaining patients’ trust is vital to the success of this big data learning system. Without full support from patients and agreement to use their data, CancerLinQ (and all technologies that capture patient outcomes) will fail.
Approximately 1.3 million patients will be told they have cancer this year. Consider how our collective knowledge would soar if oncologists could access the aggregated treatment and outcome information contained in CancerLinQ for the benefit of those patients and the 1.3 million new patients who will follow them next year, and each successive year.
Currently, the vast bulk of the clinical data contained in electronic health records is known only to the patient, the patient’s physician and hospital point of care, and the patient’s family. By making these data accessible to clinicians and researchers everywhere, CancerLinQ offers the promise of learning about the benefits and harms of specific treatment, improving quality of care, and quickening the development of new therapies.
Patients think this is all being accomplished right now, but it isn’t. They think their doctors know how most patients being treated with the treatment regimen they are being offered will fare, but they don’t. Oncologists know the results of randomized clinical trials, which guide and slowly change cancer therapy, but they only have outcome information many years after completion of those trials.
Moreover, oncologists are flooded with a tidal wave of information overload. If we assume only 1% of that new literature is relevant to an individual oncologist’s practice and that the oncologist reads two articles every night, that oncologist would still be more than 10 years behind in the current literature.
Indeed, keeping up with the mass amounts of cancer data generated is humanly impossible. CancerLinQ will quantify and populate millions of data points, making the information accessible to practicing oncologists in an exam room with their patient.
How Patient Diversity Impacts Care
As mentioned earlier, CancerLinQ allows physicians to obtain information not just from the 3% of patients accrued into clinical trials each year, but from other patients as well and might allow researchers to see how patient diversity, including race, health status, and age, may impact patient care and outcome.
For example, 90% of patients enrolled into National Cancer Institute trials are white, but 23% of the U.S. population is nonwhite; 40% of patients with kidney cancer are not healthy enough to qualify for trials that support the approval of their treatments; and only 25% of patients enrolled in clinical trials are over age 65, whereas 61% of patients with cancer are over age 65.
Comorbidities and preexisting conditions exclude many cancer patients from clinical trials, but the reality is that these patients will be prescribed treatments tested in just a small percentage of patients. Oncologists need outcome data for their many diverse patients deserving of the best treatment but who may not be well represented in clinical studies or who are ineligible to receive a specific therapy in clinical trials.
ASCO must manage expectations and be careful not to overpromise or underdeliver the benefits of this technology. As stated earlier, patient advocates have been consulted and are involved in the development of CancerLinQ. We’ve received assurance of data safety and privacy and discussed how information will be gathered and used. An easy “opt out” policy will be in place for patients who are treated at clinics and institutions using CancerLinQ but who choose not to contribute their data. The outcome data provided by CancerLinQ will help patients better understand their treatment options during conversations with their physicians, and we are hopeful that these conversations will lead to better outcomes.
Patients Helping Patients
A detailed description of CancerLinQ’s vision and how it works can be found at CancerLinQ.org. There you will see examples of case histories and how CancerLinQ can improve patient care.
One example is a rural Wyoming patient with a rare throat cancer. His local physician has very little data to support a treatment plan. By accessing CancerLinQ, the physician can find treatment and outcome data on many aggregated de-identified patients with the same rare throat cancer across the United States and consider the best treatment course for his patient. The patient’s information then becomes part of CancerLinQ’s database to help inform the care of other patients for years to come.
There are other exciting aspects of CancerLinQ being developed—which confidentiality precludes me from revealing at this time—that will directly benefit individual cancer patients. In general terms, they include the promise of genomic matching, clinical trial eligibility and suitability matching, and biomarker identification.
In addition to providing clinicians and researchers with usable, real-world cancer information, CancerLinQ also allows patients, through their data, to help other patients with the disease. Once patients receive information generated by CancerLinQ to guide their own treatment decisions, their data will then be added to the database to help those following them. One of the greatest comforts patients treated for cancer can have is the ability to use their ordeal to strike out against their disease and to help other patients. CancerLinQ provides that comfort.
Keeping Patients Informed
As the development and rollout of CancerLinQ attract more and more attention, it is important for patient advocates and cancer support group leaders to know its capabilities, so they can pass the information to patients. Soon, Twitter, Facebook, and other social media outlets will be discussing this new technology, and it is quite probable that patients will be asking their oncologists if they are part of the CancerLinQ network or if they intend to be.
Although completion of the full development of CancerLinQ is several years away, with each progress report, we can take comfort in the promise that this exciting health information technology platform offers to guide personalized cancer treatment decisions, inform research, and improve quality of life for millions of patients with cancer. ■
Disclosure: Dr. Omel reported no potential conflicts of interest.
