Case Study: Marin Cancer Project
(Marin County, California)
The Marin Cancer Project is a community organization searching for the cause of cancer, focusing their research on understanding the disproportionately high rate of cancer in Marin County. They use the information they collect to assist the research agendas of more formal organizations such as universities. Marin Cancer Project exists to let them know what's going on in their community, on a very detailed, epidemiological level. Ginger Souders Mason, Research Coordinator, notes, "We're down on the ground seeing what's going on. Asking questions and demanding answers. Pushing the agenda, so to speak." It's a vital mission. Finding a cure for cancer is "a pretty big order."
The Challenge: Gathering Epidemiological Data from Various Communities Across the U.S.
Cancer has numerous causes, many of which are poorly understood. Marin County has a very high cancer rate, particularly breast, prostate, melanoma, bladder, and bowel cancers. The San Francisco Bay Area as a whole has higher than average cancer rates. Taking their cue from the successful efforts of AIDS research activist groups, the Marin Cancer Project is working at a grassroots level, without government funding or grants, to provide researchers with information they might not otherwise have. They focus on the macro and community causes of cancer, rather than the genetic and individual propensity causes favored by most researchers.
This means that rather than examining individuals in great detail, their task is to sift through mountains of environmental data, looking for the patterns.
The Solution: Use Modern Survey Technology to Easily Organize Data Collection
Though the Marin Cancer Project has a few staff members whose salaries are paid by donations, they're largely a community organization of highly dedicated volunteers. In 2002 they had done a subjective survey with nearly 20,000 respondents - they asked people what they thought caused cancer and mapped the incidence of cancer town by town. They discovered rapidly that 20,000 surveys are difficult to deal with without software specifically designed to ease the survey process. According to Web Administrator Suzanne Ezrre, they "had a hard time doing it all manually."
For their first scientific survey they wanted to automate things as much as possible. They used Apian SurveyPro to create a survey that would allow them to efficiently gather the necessary information.
In creating the surveys, Suzanne Ezrre says, "The visual formatting was really easy. The underlying methods of creating questions so it would give us the kind of data we wanted were very easy using the software. We had a lot of grid questions with multiple parts to them and scaled responses [like agreement scales]. We had a lot of time questions [i.e. asking someone how many times they'd done something in the previous year]. We were able to set up those kinds of complex questions using the software. It was very easy to do that. The key part was bringing the information in… taking the information from it and analyzing it very easily."
Because cancer has so many potential causes, they anticipated difficulty in getting individual respondents to answer questions about all the areas they wanted to study. To reduce the time commitment for each of their 12,000 responding households, they divided the survey into three branches. Individuals would provide data about one of the three areas: eating habits and migration patterns, work exposures, or home exposures. Every respondent would answer the same demographic questions and supply information about the rates and types of cancer in their home and family, including their pets.
Their team of 2,000 volunteers went house to house in Marin soliciting respondents for the survey. To increase response rates, they not only made the paper survey available, but they also gave people the option to answer online. About 1,800 people used the online option. Because they didn't have the resources required to host their own web survey, they turned to Apian SurveyHost, with "great results." Suzanne Ezrre was the lead in designing the survey and working with the SurveyHost team. She reports, "All of it was great. I had tons of help."
Suzanne explained a special challenge they faced in the design of the survey. "We had to keep them anonymous and yet also needed to be able to keep some identification: not to identify the individual but to identify their location." They were comfortable with the safeguards provided by the SurveyHost team to protect the privacy of respondents in all surveys.
The Outcome: We'd Love to Say They've Found the Cure
Not quite yet, although they are approaching the problem in a unique, heartfelt, and determined way. As Ginger said, "The latest survey will inform us as to what kind of research needs to be done. Whether we do it or encourage university or other researchers to do it doesn't matter, as long as it gets done."
It's going to be a lengthy process to find answers. Once data has been entered or imported, staff epidemiologists Linda Remy and Jennifer Rienks will analyze the data they received. After that, they're going to conduct the survey at a nationwide level. The Family Health Outcomes Project has identified 33 counties in the US that either mirror the demographic stratifications in Marin County (peer counties) or are significantly dissimilar. Marin remains blind as to which communities are like them and which are different. Conducting extensive surveys in these 33 communities will give them a broad cross-section of data that will allow them to isolate particular contributing factors for further study. This survey will give them the solid baseline they need to take the next step.
They plan to use SurveyHost again, when they need to reactivate the web survey. SurveyHost can handle the large numbers of respondents they anticipate, as well as provide consultation on design, confidentiality, and ease of use for respondents.
Ginger said, "The first year survey led to our going community by community and looking at the immediate environment in that community. We're just beginning the process of looking at the water supply, electrical supply, water piping - what is surrounding a community - any Superfund sites or remediation problems taking place around their homes. We're looking in all kinds of ways… trying to push the envelope in terms of what research directions are taken."
We at Apian are proud to have been able to support them in their important mission. For more information, visit http://marincancerproject.org/.