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Cancer Outcomes Research in a Rural Area: A Multi-Institution Partnership Model

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Abstract

Whereas, most cancer research data come from high-profile academic centers, little is known about the outcomes of cancer care in rural communities. We summarize the experience of building a multi-institution partnership to develop a cancer outcomes research infrastructure in Southwest Georgia (SWGA), a primarily rural 33-county area with over 700,000 residents. The partnership includes eight institutions: the Emory University in Atlanta, the Centers for Disease Control and Prevention (CDC), the Georgia Comprehensive Center Registry (the Registry), the Southwest Georgia Cancer Coalition (the Coalition), and the four community cancer centers located within the SWGA region. The practical application of the partnership model, its organizational structure, and lessons learned are presented using two specific examples: a study evaluating treatment decisions and quality of life among prostate cancer patients, and a study of treatment discontinuation among prostate, breast, lung, and colorectal cancer patients. Our partnership model allowed us to (1) use the Coalition as a link between Atlanta-based researchers and local community; (2) collaborate with the area cancer centers on day-to-day study activities; (3) involve the Registry personnel and resources to identify eligible cancer cases and to perform data collection; and (4) raise community awareness and sense of study ownership through media announcements organized by the Coalition. All of the above activities were performed in consultation with the funding institution (CDC) and its project directors who oversee several other studies addressing similar research questions throughout the country. Our partnership model may provide a useful framework for cancer outcomes research projects in rural communities.

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Author information

Authors and Affiliations

  1. Department of Epidemiology, Emory University Rollins School of Public Health, 1518 Clifton Road, NE, Atlanta, GA, 30322, USA

    Michael Goodman

  2. Emory University Rollins School of Public Health, 1518 Clifton Road, NE, Atlanta, GA, 30322, USA

    Susan Butler, Colleen DiIorio, Karen Glanz, Jonathan Liff, Joseph Lipscomb & Kyle Steenland

  3. Southwest Georgia Cancer Coalition, Inc, 507 West Third Ave, Suite 6A, Albany, GA, 31701, USA

    Diane Fletcher & Phillip Roberts

  4. Georgia Comprehensive Cancer Registry, 2 Peachtree Street, Atlanta, GA, 30303-3142, USA

    Lyn Almon, Rana Bayakly, Carol Crosby, John Fowler & Kevin Ward

  5. Emory University School of Medicine, 1365 Clifton Road, NE, Atlanta, GA, 30322, USA

    Theresa Gillespie

  6. Division of Cancer Prevention and Control, National Center for Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, 4770 Buford Highway, MS K-55, Atlanta, GA, 30341, USA

    Donatus Ekwueme, Ingrid Hall, Judith Lee, Lori A. Pollack & Lisa C. Richardson

Authors
  1. Michael Goodman
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  2. Lyn Almon
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  3. Rana Bayakly
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  4. Susan Butler
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  5. Carol Crosby
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  6. Colleen DiIorio
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  7. Donatus Ekwueme
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  8. Diane Fletcher
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  9. John Fowler
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  10. Theresa Gillespie
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  11. Karen Glanz
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  12. Ingrid Hall
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  13. Judith Lee
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  14. Jonathan Liff
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  15. Joseph Lipscomb
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  16. Lori A. Pollack
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  17. Lisa C. Richardson
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  18. Phillip Roberts
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  19. Kyle Steenland
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  20. Kevin Ward
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Corresponding author

Correspondence to Michael Goodman.

Additional information

Funding was made possible by cooperative agreement # U48 DP 000043 for the Emory Prevention Research Center, from the Centers for Disease Control and Prevention (CDC). The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.

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Goodman, M., Almon, L., Bayakly, R. et al. Cancer Outcomes Research in a Rural Area: A Multi-Institution Partnership Model. J Community Health 34, 23–32 (2009). https://doi.org/10.1007/s10900-008-9123-7

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  • DOI: https://doi.org/10.1007/s10900-008-9123-7

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