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

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.

The Population Burden of Cancer: Research Driven by the Catchment Area of a Cancer Center

“…In the article by Goodman et al (6), the catchment area was defined by an existing collaboration of 33 counties in the state of Georgia, the Southwest Georgia Cancer Coalition. Four cancer centers within southwest Georgia provide care to the majority of cancer cases in this region.…”

Disparities in Cancer Stage Outcomes by Catchment Areas for a Comprehensive Cancer Center

“…Because cancer centers self-define their own CAs, there is no objective approach to formalizing boundaries that also may change over time due to dynamics in patient accessibility and utilization. Some examples of self-defined CAs include using a case density approach to identify counties that have a high proportion of a center’s patients with cancer compared with all patients with cancer, using SaTScan cluster detection software to identify counties that have a higher than expected ratio of center cancer cases compared with all cancer deaths, using Bayesian hierarchical models to identify counties with higher than expected probabilities of patients diagnosed at a center, selecting counties that contributed 75% or more of the market share of cancer cases for a center, and identifying counties that participated in a multiinstitution cancer coalition program . These approaches differ from floating CA approaches in the spatial accessibility literature, which are mainly concerned with potential access to health care facilities rather than incorporating patient utilization data.…”

Evolution of a CDC Public Health Research Agenda for Low-Risk Prostate Cancer

“… 14 Additional studies explored physician–caregiver interactions 15 and caregiver roles 16 in the decision process, as well as caregiver burden. 17 – 19 Studies also examined the process of building a collaborative study team 20 and the agreement of data ascertained from multiple sources. 21 …”