Partnership Among Peers: Lessons Learned From the Development of a Community Organization-Academic Research Training Program.

BACKGROUND: Community engagement and rigorous science are necessary to address health issues. Increasingly, community health organizations are asked to partner in research. To strengthen such community organization-academic partnerships, increase research capacity in community organizations, and facilitate equitable partnered research, the Partners in Education Evaluation and Research (PEER) program was developed. The program implements an 18-month structured research curriculum for one mid-level employee of a health-focused community-based organization with an organizational mentor and a Case Western Reserve University faculty member as partners. METHODS: The PEER program was developed and guided by a community-academic advisory committee and was designed to impact the research capacity of organizations through didactic modules and partnered research in the experiential phase. Active participation of community organizations and faculty during all phases of the program provided for bidirectional learning and understanding of the challenges of community-engaged health research. The pilot program evaluation used qualitative and quantitative data collection techniques, including experiences of the participants assessed through surveys, formal group and individual interviews, phone calls, and discussions. Statistical analysis of the change in fellows' pre-test and post-test survey scores were conducted using paired sample t tests. The small sample size is recognized by the authors as a limitation of the evaluation methods and would potentially be resolved by including more cohort data as the program progresses. Qualitative data were reviewed by two program staff using content and narrative analysis to identify themes, describe and assess group phenomena and determine program improvements. OBJECTIVES: The objective of PEER is to create equitable partnerships between community organizations and academic partners to further research capacity in said organizations and develop mutually beneficial research partnerships between academia and community organizations. CONCLUSION: PEER demonstrates a commitment to successfully developing sustainable research capacity growth in community organizations, and improved partnered research with academic institutions.

Look local: the value of cancer surveillance and reporting by American Indian clinics.

INTRODUCTION: Cancer incidence and mortality rates for American Indians in the Northern Plains region of the United States are among the highest in the nation. Reliable cancer surveillance data are essential to help reduce this burden; however, racial data in state cancer registries are often misclassified, and cases are often underreported. METHODS: We used a community-based participatory research approach to conduct a retrospective ascertainment of cancer cases in clinic medical records over a 9-year period (1995-2003) and compared the results with the state cancer registry to evaluate missing or racially misclassified cases. Six tribal and/or urban Indian clinics participated in the study. The project team consisted of participating clinics, a state cancer registry, a comprehensive cancer center, an American Indian/Alaska Native Leadership Initiative on Cancer, and a set of diverse organizational partners. Clinic personnel were trained by project staff to accurately identify cancer cases in clinic records. These records were then matched with the state cancer registry to assess misclassification and underreporting. RESULTS: Forty American Indian cases were identified that were either missing or misclassified in the state registry. Adding these cases to the registry increased the number of American Indian cases by 21.3% during the study period (P = .05). CONCLUSIONS: Our results indicate that direct reporting of cancer cases by tribal and urban Indian health clinics to a state cancer registry improved the quality of the data available for cancer surveillance. Higher-quality data can advance the efforts of cancer prevention and control stakeholders to address disparities in Native communities.

The usefulness of health care databases in Wisconsin for identifying Hmong patients with cancer.

OBJECTIVES: The Wisconsin Cancer Reporting System (WCRS) collects data on cancer diagnoses in the state of Wisconsin. California and Minnesota cancer registries have reported that Hmong have higher rates of certain cancers than the general population. WCRS collaborated with the Wisconsin Comprehensive Cancer Control Program (WCCCP) and Wisconsin United Coalition of Mutual Assistance Associations (WUCMAA) to investigate the reporting of cancer cases in the Hmong population by medical facilities. METHODS: WCRS, WCCCP, and WUCMAA conducted a mail survey of facilities in 12 Wisconsin counties where Hmong populations reside. RESULTS: The survey found that <30% of facilities collected Hmong as a demographic category or identified cancer patients as Hmong; most facilities reported Hmong patients only as Asian. A training webcast was developed for facilities to reinforce WCRS reporting requirements and to elucidate the Hmong culture. A pamphlet for Hmong patients was developed to explain the importance of self identification for more racially representative cancer data in Wisconsin.

Seeking to bridge two cultures: the Wisconsin Hmong cancer experience.

Compared to white non-Hispanics, Hmong report higher incidence rates of certain cancers and present at an advanced stage. Using a community-based participatory research approach, Hmong leaders partnered with academic researchers to assess the Wisconsin Hmong population's readiness to address cancer. Using the Colorado Tri-Ethnic Center's Community Readiness Assessment, face-to-face interviews were conducted with eight Hmong leaders. The stage of readiness to address cancer was "Vague Awareness". Six thematic areas provided insight into this stage and recommendations for effective intervention. Results emphasize the need for a bridge between Hmong and mainstream communities to provide basic, culturally appropriate education on the US healthcare system and cancer.

A community-specific approach to cancer research in Indian country.

BACKGROUND: Health care leaders in a small, rural, American Indian community and university partners used the community-based participatory research (CBPR) method to survey cancer survivors. OBJECTIVES: We sought to provide support for the use of CBPR to generate ideas for how to improve the detection and treatment of cancer in American Indian communities. METHODS: Partners worked together to develop a mail-out survey and send it to the Indian health clinic's patients who had cancer in the past 5 years. The survey sought information on their experiences with cancer screenings, cancer diagnoses, and accessing and receiving cancer treatment. RESULTS: Community leaders identified three priority areas for intervention: (1) high incidence of breast cancer; (2) lack of culturally appropriate cancer education; and (3) need for a more in-depth assessment. CONCLUSIONS: CBPR's partnership principle allowed for results to be viewed within the community's context, availability of community resources, and relevant cultural beliefs and traditions.