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Frequently Asked Questions
Questions
General:
- What are geographic information systems (GIS)?
- What is the Geographic Information System for Breast Cancer Studies on Long Island (LI GIS)?
- Who developed this research tool?
- What geographic area is covered by the LI GIS?
- How can the public learn about the LI GIS and GISs in general?
- How has the community participated in development of the system?
About the data:
- What kinds of data are in the LI GIS?
- Where do the datasets come from?
- How are datasets selected?
- How many years back do the data go?
- What happens with information provided by the community about sources of environmental pollution?
- Will data from the studies conducted through the Long Island Breast Cancer Study Project (LIBCSP) be included in the LI GIS?
About research:
- How might researchers use the LI GIS to conduct research on breast cancer?
- How will information be made available on studies conducted using the LI GIS?
- Are funds available to support research?
- Is Institutional Review Board (IRB) approval needed for research projects?
Answers
What are geographic information systems (GIS)?
GISs are powerful computer systems that permit layers of information, such as on cancer and the environment, to be superimposed and manipulated. The systems consist of hardware, software, and data tables.
What is the Geographic Information System for Breast Cancer Studies on Long Island (LI GIS)?
The Geographic Information System for Breast Cancer Studies on Long Island (LI GIS) is a tool for researchers to use to conduct studies on potential relationships between environmental exposures and breast cancer on Long Island. Development of the LI GIS was mandated by Congress under Public Law 103-43, June 10, 1993, and is part of the Long Island Breast Cancer Study Project (LIBCSP). The system potentially can be used for research on other types of cancer and other diseases and conditions. The LI GIS consists of more than 80 datasets that have geographic, demographic, health, and environmental data on Nassau and Suffolk counties, and to a lesser extent on surrounding counties. It also has statistical and analytical tools for researchers.
Who developed this research tool?
In May 1999, AverStar, Inc/Titan, Inc., of San Diego, CA, was awarded a 5-year contract from NCI to develop and maintain the LI GIS. In October 2004, NCI awarded a contract to Titan, Inc., for continued maintenance and updating of the LI GIS for one year plus two option years. The contract presently is in the second option year. (Titan merged with L-3 Communications in November 2005)
What geographic area is covered by the LI GIS?
The LI GIS focuses on Nassau and Suffolk counties (Long Island), New York. However, additional environmental data are included with less detail and geographic precision for areas 50 kilometers from the two counties, and within a 100-mile radius from the midpoint of the boundary line between the two counties. The extended area includes counties in New York, Connecticut, New Jersey, Pennsylvania, Rhode Island, and Massachusetts.
How can the public learn about the LI GIS and GISs in general?
This website provides a gateway to information about the LI GIS and GISs in general. The links under the LI GIS and the Public tab on the home page provide information and give access to websites that have information on GISs, breast cancer, and breast cancer on Long Island. Three sample maps for the public were created to provide users with a window into how GIS works.
How has the community participated in development of the system?
Long Island community members have helped in the development of the LI GIS from its earliest stages. The working group that assisted NCI in preparing the Request for Proposals (RFP) to develop the LI GIS (the system requirements) held workshops in 1997 on Long Island to solicit community input. In the fall of 1999 and after the contract was awarded, the LI GIS team hosted town meetings on Long Island to describe the LI GIS and to obtain historical information from the community about sources of environmental pollution that may not be in existing records. Community members continue to submit information. In the fall of 2000, the team returned to Long Island to provide a preview of the LI GIS. The community has helped to evaluate the Web site and to test the public mapping facility that is under development. Also, five community members serve on the LI GIS Oversight Committee, which is the advisory group for the system.
About the data:
What kinds of data are in the LI GIS?
There are four categories of data in the system:
- geographic data, including the location of roads, water features, parks and landmarks, and base maps, which define the legal boundaries of geographical areas and serve as reference points for other maps for Nassau and Suffolk counties;
- demographic data, such as data on the age, race, sex, and income of the population;
- health outcome data, including relative breast cancer incidence data (observed/expected) by ZIP Code, and health facilities data;
- environmental data, including land use; land cover; railroads; traffic; water use; potential sources of water pollution; releases of chemicals into water, air, and soil; electrical power lines; information on toxic chemicals and hazardous and municipal waste; and radiation
Where do the datasets come from?
The data come from many sources. Sources of geographic data include State Health Departments, Nassau and Suffolk counties, and the U.S. Postal Service. Sources for demographic data include the U.S. Bureau of the Census. Health data sources include the New York State Department of Health. Environmental data are provided by the State Health Departments, U.S. Environmental Protection Agency (EPA), U.S. Geological Survey (USGS), and U.S. Department of Agriculture (USDA).
The LI GIS team has focused on identifying, prioritizing, and acquiring a core set of existing datasets believed to be important to support research on relationships between environmental exposures and breast cancer. The datasets were evaluated for their completeness, geographic applicability, and their ability to provide a meaningful level of detail. Strong emphasis has been placed on high-quality data, so that researchers and the public can have confidence in the system and the research findings produced with their use. The LI GIS Oversight Committee reviews and approves datasets before they are added to the system.
How many years back do the data go?
How long ago data are available depends on the specific database. Data that date back many years are highly desirable, because of the long latency, perhaps 20 years or more, between the occurrence of whatever factor(s) may be responsible for breast cancer and onset of the disease.
What happens with information provided by the community about sources of environmental pollution?
Each piece of information is documented by topic, location, source of information (e.g., letter, news clipping), and whether the information is confidential. The information then is categorized as: potentially valuable and slated to investigate further for possible dataset acquisition, potentially useful for validating current LI GIS datasets, potentially useful for researchers doing focused studies, and level of detail is too limited to be useful. A database with all four categories of information is available to researchers who are using the LI GIS. Researchers will be cautioned that the information has not been verified and, therefore, may not be accurate. The information will not be available on the public Web site for this reason.
Will data from the studies conducted through the Long Island Breast Cancer Study Project (LIBCSP) be included in the LI GIS?
Data from these studies are not housed in the LI GIS. One of the features of the LI GIS is that it is possible for researchers to use data in conjunction with the LI GIS, without having it reside within the system.
About research:
How might researchers use the LI GIS to conduct research on breast cancer?
Researchers may use the system to:
- calculate, display, and compare disease rates;
- identify clustering of disease spatially and temporally (in time);
- estimate and verify potential exposures;
- develop and test hypotheses and possible relationships between a disease and potential exposure; and
- identify gaps in existing data.
How will information be made available on studies conducted using the LI GIS?
This Web site will include the names of the principal investigators and summaries of their research projects as they get under way. As part of their agreement to use the LI GIS, principal investigators are asked to provide updates on their findings as they are published, or otherwise made public by them, for inclusion on the Web site.
Are funds available to support research?
Researchers must obtain separate funding from other sources. The LI GIS provides technical assistance to use the system and may be able to accommodate special software or database requirements that are not already included in it.
Is Institutional Review Board (IRB) approval needed for research projects?
Researchers are responsible for obtaining approval of their research projects from the appropriate local or private IRB responsible for assuring protection of human research subjects. IRB approval is not required when applying to use the LI GIS, but it is needed before access to the system is provided.
