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The Primary Beneficiaries: Cancer Patients

When statewide central cancer registries were created through state statutes in the 1980s and early 1990s, the emphasis was on simply learning about the effects of the disease, who it was affecting, and what trends were identifiable. Since treatment options were limited back then, two- or three-year-old data might not have made much of a difference to an individual cancer patient. There was much less of a focus or need to make registry data available in “near real-time.”

Indeed, earlier this century, there had been little progress in the treatment of lung cancer during the previous 30 years, and certainly not enough to have had a significant impact on survival rates. Malignant melanoma was known as the “bad kind of skin cancer,” with few treatment options. Similarly, kidney cancer was treated with surgery, followed by watchful waiting to see whether the tumor would return and spread.

The data revolution in genomics – the backbone of precision medicine – has radically changed this scenario. Today, there are novel therapies that target a specific gene mutation, or an overactive pathway, in cancer cells for lung, breast, and colon cancer, which are the three types responsible for the most deaths from the disease.

In parallel with these advances in medicine, data analytics and computer processing have advanced tremendously. Prior to recent modifications in statewide cancer reporting systems, incidence cases were created entirely by hand – meaning that patient identification, extraction of data from pathology reports, and linkage of sequential pathology reports for that patient were all processed manually.

It is time to step into the future (actually, the present) and leverage data for a greater purpose.

All sorts of issues – and problems – are inevitable in that scenario. Some patients change their names; others may be diagnosed at one hospital, undergo surgery at another, receive chemotherapy elsewhere and receive radiation at yet a different facility. Such cases were all handled manually to avoid duplication of the patient or the case in the statewide cancer data reporting system.

The time has come to employ modern computer technologies, combined with greater information about cancer, to create a paradigm of timely use of not only population-based data, but also of treatment data. It is time to step into the future (actually, the present) and leverage data for a greater purpose.

Public health policymakers have the potential to more-quickly encourage the healthcare system to achieve a higher standard of care if they simply obtain access to timely data. Consider that it took several years before testing for the hormone Estrogen Receptors and Progesterone Receptors became the standard of care for breast cancer. With more-immediate monitoring and reporting, outcome-improvement trends could be recognized more rapidly and the minimum threshold for care could be improved.

Patients, of course, would be the primary beneficiaries. One of the objectives of Healthy People 2020 is to improve the availability of health-related information so that, as recommended by the Institute of Medicine in its 2009 report, patients can make more-informed choices on where to seek medical care.

With a near-real-time registry, patients – especially those with rare or aggressive tumors – could potentially search throughout California to find others with similar conditions and identify where the best outcomes have been achieved, and why.

Clinicians and hospitals would also benefit from access to more-timely data. Weekly, monthly, quarterly, and annual reports can help clinicians and hospitals enumerate associated caseloads.

One illustration: As part of its certification process, every pathology laboratory must demonstrate that it is not an outlier in the specific characteristics of the cancers it diagnoses. This means, for example, that the lab’s quality improvement (QI) officer must demonstrate that 75 percent of the breast cancers diagnosed in the previous year will have tested positive there for the special estrogen receptor and progesterone receptor markers.

These markers affect clinical care and prognosis. If the results are not close to 75 percent, the lab has to confirm the results with repeated testing elsewhere. For the most part, clinicians and hospitals do not have easy access to these data.

Often, hospital laboratories have to comb through all of their pathology reports, identify the breast cancer reports that are new diagnoses for the year, and then extract the data. Pathology laboratories typically have tens of thousands of reports, so this manual process can amount to a significant workload.

CCR’s vision, for itself and statewide cancer registries, is to provide clinicians and hospitals with the ability to submit a request for an annual report from the registry for their own laboratories. An extension of capabilities to support weekly, monthly, and quarterly reports can contribute to near-real-time quality management in order to follow trends within institutions. Certifying organizations can begin to receive reports that are flagged if their results deviate from expected norms.

Potential advantages can also be realized for the QI officers at hospitals that use a particular pathology laboratory. Similar to patients looking for treatments with the best outcome, QI officers and individual clinicians can compare their outcomes to those of colleagues across the state. Some healthcare organizations already use this type of data to monitor the effectiveness of surgery in clearing tumors and in providing adequate sampling of regional lymph nodes to properly stage tumors.


Finally, health insurance companies have a vested interest in quality data, in general and for a specific reason; that is, they are currently changing how they will reimburse healthcare providers by moving from an intervention-based system to a model that includes quality metrics. This should be an evidence-based transition, and some of the evidence can – should – come from cancer registries that have timely, accessible data.

The list of reasons for cancer registries to enter the 21st century is a long one. And most importantly, so is the list of those who will benefit.