Cancer Outcomes Research in a Rural Area: A Multi-Institution Partnership Model
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.
KeywordsCancer Rural population Outcomes research Partnership
- 1.Institute of Medicine, Committee on Cancer Research among Minorities and the Medically Underserved. (1999). The unequal burden of cancer: An assessment of NIH research and programs for ethnic minorities and the medically underserved. Washington, DC: National Academy Press.Google Scholar
- 2.Kinsey, T., Jemal, A., Liff, J., Ward, E., & Thun, M. (2007). Trends in mortality from four major cancers by education, United States, 1993–2001 American Association for cancer research. First conference on the science of cancer health disparities Atlanta, GA.Google Scholar
- 4.Center for Health Policy Research and Ethics, C. (2000). Linking rural health services research with health policy Pentagon City, VA.Google Scholar
- 8.Couto, R., Simpson, N., & Harris, G. (1994). Sowing seeds in the mountains: Community based coalitions for cancer prevention and control. Rockville, MD: National Cancer Institute. NIH Publication No. 94-3779.Google Scholar
- 9.Lopez, D., Chen, M., Maddox, Y., Boyce, C., Burhansstipanov, L., Clanton, M., Freeman, H., Gines, V., Hiatt, R., Howard, G, et al. (2004). Making cancer health disparities history: Report to the trans-HHS cancer health disparities progress review group. Washington, DC.Google Scholar
- 10.U.S. Census Bureau. (2002). 2000 Census of population and housing, summary population and housing characteristics, PHC-1-12, Georgia. Washington, DC.Google Scholar
- 11.Georgia Department of Human Resources, and Health, Division of Public Health. (2006). Georgia comprehensive cancer registry policy and procedure manual for reporting facilities. Atlanta, GA.Google Scholar
- 12.Centers for Disease Control and Prevention. (2007). Facts about the PRC Program. Retrieved 12/28/2007, from http://www.cdc.gov/prc/about-prc-program/facts-about-prc-program.htm.
- 14.Gilliland, F. D., Hoffman, R. M., Hamilton, A., Albertsen, P., Eley, J. W., Harlan, L., et al. (1999). Predicting extracapsular extension of prostate cancer in men treated with radical prostatectomy: Results from the population based prostate cancer outcomes study. Journal of Urology, 162(4), 1341–1345.PubMedCrossRefGoogle Scholar
- 16.Potosky, A. L., Legler, J., Albertsen, P. C., Stanford, J. L., Gilliland, F. D., Hamilton, A. S., et al. (2000). Health outcomes after prostatectomy or radiotherapy for prostate cancer: Results from the prostate cancer outcomes study. Journal of the National Cancer Institute, 92(19), 1582–1592.PubMedCrossRefGoogle Scholar
- 17.Stanford, J. L., Feng, Z., Hamilton, A. S., Gilliland, F. D., Stephenson, R. A., Eley, J. W., et al. (2000). Urinary and sexual function after radical prostatectomy for clinically localized prostate cancer: The prostate cancer outcomes study. Journal of the American Medical Association, 283(3), 354–360.PubMedCrossRefGoogle Scholar
- 26.Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, and Division of Cancer Prevention and Control. (2006). National comprehensive cancer control program 2006/2007. Atlanta, GA.Google Scholar
- 27.Niederhuber, J. (2007). The nation’s investment in cancer research: A plan and budget proposal for fiscal year 2008 (NIH Publication No. 06–6090). Rockville, MD: National Cancer Institute.Google Scholar