The National Cancer Institute (NCI) has maintained, since 1973, a registry of every diagnosed case of cancer within participating U.S. states and a few smaller localities, including the Bay Area. Debby Oh, PhD, a data scientist in the Department of Epidemiology and Biostatistics who works with the data through the Greater Bay Area Cancer Registry, calls it “the closest we have to Scandinavian-style health data.”
But reported cancer statistics don’t always come in a user-friendly format: They are commonly released in printed or PDF annual reports which run 30-plus pages long. There are also challenges in reporting cancer statistics related to protecting patient anonymity.
Oh and her colleagues in the DREAM Lab – led by Scarlett Gomez, PhD, Iona Cheng, PhD, and Salma Shariff-Marco, PhD – have developed a website that will make the data much more accessible to policy makers, researchers and community centers. Called California Health Maps, it is a color-coded map of the state that shows incidence of 12 of the top types of cancer in each area as well as data on other demographic and contextual factors. The user can narrow results by cancer type, sex, and race/ethnicity.
For the first time, California Health Maps makes it possible for users to zoom in closer than the county level. The team wanted to respond to researchers and public health officials’ need to target prevention and treatment programs to areas smaller than counties. They nevertheless had to keep the geographical zones large enough to provide statistically significant numbers and safeguard patient anonymity.
Through a collaborative process with NCI, the team grouped census tracts in to “zones” with similar demographic and socioeconomic characteristics to reach a minimum population of 50,000 while remaining geographically compact. (Political mapmakers, take note!) The team then partnered with Oakland-based non-profit, GreenInfo, to design and build the website. The site currently displays data for three different types of geographical area – the custom-made zones, medical service study areas and congressional districts.
Moon Chen, PhD, MPH, at UC Davis is among the DREAM Lab’s regular collaborators. He is working with the lab to identify the risk factors that cause non-smoking Asian women to have significantly higher rates of lung cancer than other non-smoking groups. For that project, Chen hopes to use the map to locate pockets of cases and then focus study recruitment efforts on those neighborhoods.
Chen explained that the map will help the UC Davis Comprehensive Cancer Center understand the cancer burden in its catchment area, as the NCI has recently tasked comprehensive cancer centers with doing.
“This is one of the few tools that we have to look at our catchment area geospatially,” he said. When using the map with board members, “we got all kinds of stuff! It’s almost like a video game.”
When looking at the zones that send cancer patients to UC Davis, Chen said, he and his colleagues compare cancer trends in them to trends statewide, as displayed in charts and graphs below the maps. This illustrates where UC Davis is beating the average and where it may be falling behind.
Oh hopes that sorting the data in a number of ways may also help drive new research hypotheses. She added: “The maps can be downloaded, so researchers can insert them right into their grant applications.”
California Health Maps’ usefulness has already caught researchers’ eyes. NCI has asked if it would be possible to make an open source template version of the website. Now similar sites are in the works for other states, starting with Louisiana and Idaho.