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Disease Maps as Context for Community Mapping: A Methodological Approach for Linking Confidential Health Information with Local Geographical Knowledge for Community Health Research

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Abstract

Health is increasingly understood as a product of multiple levels of influence, from individual biological and behavioral influences to community and societal level contextual influences. In understanding these contextual influences, community health researchers have increasingly employed both geographic methodologies, including Geographic Information Systems (GIS), and community participatory approaches. However, despite growing interest in the role for community participation and local knowledge in community health investigations, and the use of geographical methods and datasets in characterizing community environments, there exist few examples of research projects that incorporate both geographical and participatory approaches in addressing health questions. This is likely due in part to concerns and restrictions regarding community access to confidential health data. In order to overcome this barrier, we present a method for linking confidential, geocoded health information with community-generated experiential geographical information in a GIS environment. We use sophisticated disease mapping methodologies to create continuously defined maps of colorectal cancer in Iowa, then incorporate these layers in an open source GIS application as the context for a participatory community mapping exercise with participants from a rural Iowa town. Our method allows participants to interact directly with health information at a fine geographical scale, facilitating hypothesis generation regarding contextual influences on health, while simultaneously protecting data confidentiality. Participants are able to use their local, geographical knowledge to generate hypotheses about factors influencing colorectal cancer risk in the community and opportunities for risk reduction. This work opens the door for future efforts to integrate empirical epidemiological data with community generated experiential information to inform community health research and practice.

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Acknowledgments

This material is based in part upon work supported by the National Science Foundation under Grant No. 0824667. A portion of this work was also supported by Cooperative Agreement Number 5U48DP000034-05 from the Centers for Disease Control and Prevention, through the University of Iowa Prevention Research Center. The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. The University of Iowa Center for Global and Regional Environmental Research also provided support.

The authors would like to thank Gerard Rushton, Rangaswamy Rajagopal, Naresh Kumar, Rex Honey, Anne Wallis, Consuelo Guayara, David Haynes and Angela Bellew at the University of Iowa; Chetan Tiwari at the University of North Texas; the State Health Registry of Iowa; the Bureau of Vital Statistics at the Iowa Department of Public Health (IDPH); current and former Storm Lake Task Force members; Holly Smith and Jeanna Jones at IDPH; Carlos Gallego of the Intercultural Cancer Council; the many research participants and interested members of the Storm Lake community; the Buena Vista Regional Medical Center, United Community Health Center and Buena Vista County Public Health and Home Care; the Iowa Consortium for Comprehensive Cancer Control; and research assistants, Barbara Aiona, Angela Eischeid and Jennifer Rundall.

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Authors and Affiliations

  1. Department of Population Health, Medical College of Wisconsin, 8701 Watertown Plank Road, Milwaukee, WI, 53226, USA

    Kirsten M. M. Beyer

  2. Iowa Consortium for Comprehensive Cancer Control, Iowa City, IA, USA

    Sara Comstock

  3. United Community Health Center, Storm Lake, IA, USA

    Renea Seagren

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  1. Kirsten M. M. Beyer
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  2. Sara Comstock
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  3. Renea Seagren
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Correspondence to Kirsten M. M. Beyer.

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Beyer, K.M.M., Comstock, S. & Seagren, R. Disease Maps as Context for Community Mapping: A Methodological Approach for Linking Confidential Health Information with Local Geographical Knowledge for Community Health Research. J Community Health 35, 635–644 (2010). https://doi.org/10.1007/s10900-010-9254-5

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  • DOI: https://doi.org/10.1007/s10900-010-9254-5

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