New York Creates Online Cancer Data Map

The statewide cancer map shows diagnosis rates and potentially hazardous sites.

by / May 21, 2010

In what may be the first of its kind nationally, New York recently unveiled a comprehensive, interactive, statewide cancer data map that shows diagnosis rates and potentially hazardous sites nearby.

Launched May 3, and created by the New York State Department of Health, the map allows users to view how many people in a given geographic area have been diagnosed with cancer, including the type (23 different types are included, identified by the organ in which the cancer originated). It reflects peoples' addresses at the time of diagnosis (using state diagnosis data from 2003 through 2007 and population data from 2000), but doesn't take into account age or individual risk factors.

Users also can overlay an array of "environmental facilities and sites," such as chemical storage and hazardous waste facilities, brownfields and commercial pesticide sellers. By inputting an address or ZIP code, users can attain this information, easily zooming in and out of the map. But doing so comes with a warning -- they're raw numbers that should be carefully interpreted.

"It's a tool that people can use," said Department of Health Spokeswoman Claire Pospisil, "but like a lot of information, there are a lot of caveats."

Those warnings are prominently displayed on the department's FAQ page and have oft been repeated in news articles on the topic.

"The website ... is very explicit about that," said American Cancer Society Senior Vice President of Cancer Control Dave Momrow. "It's informative; it educates people. But it also issues some very explicit cautions about drawing conclusions."

While such disclaimers are needed to dispel confusion, they also illustrate the journey undergone to create the online map. After its creation was proposed, passed by the state Legislature and signed by the governor in 2008, the Department of Health and the American Cancer Society (ACS) opposed it -- they were concerned that the raw data could be misinterpreted and that the collection of certain data would place unrealistic expectations upon the New York State Cancer Registry, which collects cancer incident rates.

Momrow said his organization has always been an advocate of the premise behind the map's creation, as it's another way to help people understand the distribution and burden of cancer in their communities. But as the bill was originally written, it would have required the registry to collect data on people's family, work and residential history, he said.

Doing so would have been virtually impossible, Momrow said, because the registry obtains its data from the doctors who diagnose the cancer but who don't collect such detailed patient histories. "It's not information in a medical record, and therefore the data would be incomplete and inconsistent," he said. "Cancer is complex -- it's not one disease; it's hundreds of diseases. It develops slowly in people, and it's difficult to determine what causes cancer from an environmental perspective."

An amendment was made to the bill that removed the aforementioned requirements, and the ACS now supports the map, Momrow said. Over time, the data can be used to spot possible trends, and raise questions and hypotheses by scientists, he said.

"The map may be able to suggest that additional research should be considered," Momrow said. "But a lot more information needs to be collected and evaluated before doing that research."

And for those worried about being identified through the map, the FAQ page says that is "very unlikely." Because of these concerns, census blocks were grouped together with neighboring blocks to prevent identifying individuals with cancer. "Blocks were combined until the area contained a minimum of six total male cases and six total female cases," according to the FAQ page.

While the Department of Health is being very clear in noting the map can't prove direct links between environmental facilities and cancer, it's the hope of at least one lawmaker that this is a first step in better understanding those correlations.

"It's a tool experts can use to help focus their research, but it also gives the public the ability to get information they've never been able to get easily before now," New York state Sen. Tom Libous said in a press release. "The website might encourage some of us to ask questions about cancer and our environment that we've never asked before, and I view that as a good thing."

Photo by Phill Davison. CC Attribution-Noncommercial-Share Alike 2.0 Generic

Karen Wilkinson

Karen is a former staff writer for Government Technology magazine.