More health data wanted

Cancer registry extensive, but less information about other illnesses

August 05, 2008|By Frank D. Roylance | Frank D. Roylance,Sun reporter

A state auditor's finding that a private contractor tampered with the numbers in the Family Health Administration's cancer registry has cast a new spotlight on the disease registries used to identify and address emerging threats to public health.

Experts in the field say the patient data in the nation's various cancer registries are vital to their efforts to track trends and focus research and public education.

But they also complain that there are no comparable national registries for a long list of public health problems of growing concern in the United States.

"If a Baltimore City health officer wants to know how we're doing for birth defects and birth outcomes, it's hard to get an answer," said Thomas A. Burke, an epidemiologist and professor in the Johns Hopkins University's Bloomberg School of Public Health.

"The same goes for many things that are very important, such as Alzheimer's, autism and multiple sclerosis," he said. "Asthma and heart disease are things we are just beginning to get a handle on."

Cancer registries contain information on the age, race, gender, county of residence, type of cancer, treatment and outcome for as many patients as possible who have been diagnosed with the disease. The goal is to capture data for all of them - from hospitals, cancer centers, diagnostic labs, nursing homes and private practitioners.

"The original purpose of the cancer data was to track cancer incidence and look for reasons why cancer rates might be higher or lower in different parts of the country," said Dr. Elizabeth Ward, director of surveillance research for the American Cancer Society.

"Now they're used more broadly. Many researchers are using the data to look at variations in cancer treatment in different population groups, for example, and to understand the reasons for those differences," she said. "The system really has enabled us to learn quite a bit about the causes and trends of cancer."

The Surveillance Epidemiology and End Results (SEER) registry was established in 1973 by the National Cancer Institute for selected parts of the country. In the 1990s, the Centers for Disease Control and Prevention established the first national registry, called the National Program of Cancer Registries.

Each state maintains a cancer registry, guided by uniform standards established by the North American Association of Central Cancer Registries (NAACCR). Most state registries are managed by state health departments or academic institutions. Fewer are maintained, like Maryland's, by private contractors, according to NAACCR President Susan Gershman.

Maryland's cancer registry made news last week when an audit ordered by the state Department of Legislative Services disclosed that someone employed by Macro International Inc. - the contractor hired to manage Maryland's cancer registry - deliberately and "methodically" altered the data.

Among other problems, the audit revealed that someone at Macro changed the records of 400 healthy patients to indicate that they had received a cancer diagnosis.

Auditors also noted that, in 2003 and 2004, Macro had difficulty obtaining certification from the NAACCR for its Maryland cancer data. The organization carefully reviews registries annually and awards them "gold" or "silver" certification for their accuracy.

"What they look for is completeness of reporting," said Gershman. "Gold is the highest quality. Silver is still good, but you want to aim for gold."

Such certification is vital to researchers and public health officials who rely on the data to validate their work. Private contractors could presumably lose their contracts if they failed repeatedly to receive NAACCR certification. Macro officials have declined to comment on the findings.

The company has since been replaced, and the issue has been referred to the criminal division of Maryland Attorney General Douglas F. Gansler's office.

Burke, who has used Maryland's cancer registry for many years, said he's unaware of similar problems with registries elsewhere. But he said registry maintenance is labor-intensive and expensive, and demands "a real commitment to doing it right."

The databases are a vital public health resource, he said, and "I've spent a good chunk of my career trying to get more registries" for diseases other than cancer.

There are registries for birth defects in 15 states, but not in Maryland, according to the CDC. Efforts are under way in five states to establish a registry for muscular dystrophy.

In 2000, the Pew Environmental Health Commission called for the establishment of a National Health Tracking Network to gather data on a variety of disease outbreaks, clusters and emerging threats, to establish cause-and-effect relationships and to guide public health intervention.

"Cancer is important ... but we're just scratching the surface on so many other chronic diseases and conditions that we really don't know about," Burke said.

Since the initial Pew report, there has been progress in drafting federal legislation to establish a more comprehensive tracking network. There are also new federal-state partnerships, better surveillance, data analysis and communications to build upon now, according to a follow-up report last year.

Maryland's cancer registry has been central to cancer prevention and treatment efforts here, Burke said. "We also can have those benefits for other diseases. ... It takes political will, and it does take funding, but there's an awful lot of interest there."

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