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.
Goodman
Michael
M
Department of Epidemiology, Emory University Rollins School of Public Health, Atlanta, GA 30322, USA. mgoodm2@sph.emory.edu
Almon
Lyn
L
Bayakly
Rana
R
Butler
Susan
S
Crosby
Carol
C
DiIorio
Colleen
C
Ekwueme
Donatus
D
Fletcher
Diane
D
Fowler
John
J
Gillespie
Theresa
T
Glanz
Karen
K
Hall
Ingrid
I
Lee
Judith
J
Liff
Jonathan
J
Lipscomb
Joseph
J
Pollack
Lori A
LA
Richardson
Lisa C
LC
Roberts
Phillip
P
Steenland
Kyle
K
Ward
Kevin
K
D000046:Academic Medical Centers; D000368:Aged; D002173:Cancer Care Facilities / Q000458:organization & administration*; D002391:Catchment Area, Health; D002487:Centers for Disease Control and Prevention, U.S.; D003153:Community Health Services; D003299:Cooperative Behavior; D005845:Georgia / Q000453:epidemiology; D006265:Health Care Coalitions; D006801:Humans; D015994:Incidence; D007373:Interinstitutional Relations; D008875:Middle Aged; D017146:Models, Organizational; D009369:Neoplasms / Q000453:epidemiology / Q000517:prevention & control*; D019982:Organizational Case Studies; D017063:Outcome Assessment, Health Care / Q000458:organization & administration*; D010352:Patient Dropouts / Q000523:psychology / Q000706:statistics & numerical data*; D055818:Public-Private Sector Partnerships; D012041:Regional Medical Programs / Q000458:organization & administration*; D012042:Registries; D019035:Rural Health Services / Q000458:organization & administration*; D014481:United States