This subproject is one of many research subprojects utilizing theresources provided by a Center grant funded by NIH/NCRR. The subproject andinvestigator (PI) may have received primary funding from another NIH source,and thus could be represented in other CRISP entries. The institution listed isfor the Center, which is not necessarily the institution for the investigator.
Specific Aims The overall goal of this project is to evaluate the process and outcomes of a community-academic partnership empowerment intervention aimed at improving diabetes awareness, prevention, access to care, and treatment among racial and ethnic minorities. The process and outcome evaluation will use participatory action research methods with community partners involved in all aspects of the evaluation enterprise. The specific intervention is based on the Healthy African American Families (HAAF) empowerment and mobilization strategy currently being examined by Project Export investigators. This model consists of five components: a planning committee, a kick-off conference, establishment of topical working groups to develop action plans, a community consensus building conference, and implementation of working group action plans. This model will now be used to enhance diabetes prevention and care commencing with a kick-off conference in March 2005. The overall goals are to: 1) To partner with community members in CKD related research; 2) To develop, evaluate and implement innovative strategies for disseminating culturally sensitive evidence-based CKD-related health information to patients, people at risk, and health care professionals in diverse low-income communities;3) To train and develop highly skilled, research scientists with culturally sensitive community-based participatory research skills to improve health outcomes for patients with CKD and major CKD risk factors; 4) To establish a monitoring process to evaluate ongoing program activities and the impact of the Community Core program on key endpoints.The address the above goals, our specific aims are: 1) To determine the outcomes of participating in a community mobilization effort on: a) Participants? knowledge, attitudes, and beliefs about access to diabetes care, prevention and treatment options. b) Participants? and their agency?s professional ties (networks) to other service providers both in and out of the diabetes service provider area 2) To describe and document the process of community participation in addressing the health disparity of diabetes. 3) To develop future research proposals based on the diabetes initiative and community-based participatory research methods. Background and SignificanceOn October 30, 1972, President Nixon signed into law the establishment of a unique disease-targeted entitlement program, the End-Stage Renal Disease (ESRD) Program. Because the federal government has much of the responsibility for paying for the care for ESRD patients, the policy relevance for the prevention and treatment of pre-end-stage chronic kidney disease (CKD) is of great public policy importance. In addition, as medical treatments for causes and complications of CKD increase, the need for studies to determine the most efficient and effective ways to provide care for these patients is also essential. These factors also exist in the context of persistent racial-, ethnic-, and poverty-related disparities in prevalence as well as that of poor health outcomes for CKD. Since Medicare began funding renal replacement therapy in the form of either dialysis or transplantation, there has been a consistent increase in the number of patients receiving treatment. In 1974, only 16,000 patients were enrolled in the ESRD Program. While stroke and cardiovascular mortality rates have fallen over the last twenty years, ESRD has continued to rise with over 400,000 ESRD patients in 2002, of whom nearly 35% are African Americans (United States Renal Data System [USRDS], 2002). In addition to being at high risk to develop ESRD, patients with CKD are at a substantially increased risk for the development of premature cardiovascular morbidity and mortality (Keane, 2000; Mann, Gerstein, Pogue, & Yusuf, 2001; Ruilope, van Veldhuisen, Ritz, & Luscher, 2001). The incidence of CVD among ESRD patients has been reported to approach 5-10 times the rate in the general population and accounts for nearly 50 percent of all ESRD deaths (Foley, Parfrey, & Samak, 1998). In 1977, a report by Easterling (1977), and soon thereafter by others (Ferguson, Grim, & Opgenorth, 1987; Ferguson & Morrisey, 1993; Jones & Agodoa, 1993; Martins, Tareen, & Norris, 2002; Rostand, Kirk, Rutsky, et al., 1982) noted the racial differences in the incidence of ESRD with the most disproportionate burden existing among African Americans compared with Whites. With an incidence of 970 cases per million, African Americans suffer from one of, if not the highest reported rates of treated ESRD in the world (USRDS, 2002). ESRD rates are 1.5-4 times higher for all racial and ethnic minorities in the US when compared to Whites (USRDS, 2002). Recent analyses of the third National Health and Nutrition Survey (NHANES III) suggest that as many as 20 million Americans may have CKD, and those most susceptible to CKD are characterized by higher blood pressures, diabetes mellitus, older age ( 65 years), lower socio-economic status, and/or belong to a racial/ethnic minority group (Coresh, Aston, Greene, Eknoyan, & Levey, 2003; Coresh, Wei, McQuillan, et al., 2001; Jones, McQuillan, Kusek, et al., 1998; Norris & Agodoa, 2002). However, the extent that race/ethnicity, access to care, socio-economic status and environmental exposures contribute as independent CKD risk factors is unclear (Nzerue, Demissachew, & Tucker, 2002). In 2000, the U.S. Department of Health and Human Services (DHHS), spearheaded by Dr. David Satcher, then the Assistant Secretary of Health and U.S. Surgeon General, released its 10-year health objectives for the nation, Healthy People 2010. The two main objectives of Healthy People 2010 are to increase quality and years of healthy life and eliminate health disparities. The blueprint for the nation?s plan to achieve these goals calls for the monitoring of 467 specific objectives in 28 focus areas, one of which is CKD (United States Department of Health and Human Services [USDHHS], 2000). National recognition of CKD as a critical area of racial/ethnic disparity in health status highlights the magnitude and importance of this issue as a significant area of public health concern. Delayed referral of patients with CKD to specialist care is associated with prolonged hospital stays, increased expense, and higher mortality rates (Eadington, 1996; Kausz, Obrador, Arora, Ruthazer, Levely, & Pereira, 2000; Winkelmayer, Owen, Levin, & Avorn, 2003). In the United States, African Americans, Hispanics, Native Americans, Asian Americans, and Pacific Islanders are much less likely than Whites to be referred to a nephrologist and undergo renal replacement therapy in a timely manner because of socioeconomic factors, such as poverty and lack of health insurance, which disproportionately affect ethnic minorities (Ifudu, Dawood, Iofel, Valcourt, & Friedman, 1999; Jones, McQuillan, Kusek, et al., 2000; Kaiser Commission, 2000). Community-based strategies for prevention and early intervention that are adapted for cultural and environmental factors appear the most promising, because interventions at a community level need to be informed by the unique needs of the population (Crawford, Maxy, & Dacosta, 2002). An overall community-based approach to improve outcomes for CKD patients and to address CKD and CKD-risk factor disparities is clearly articulated by the National Institutes of Health (NIH)/National Institute for Diabetes, Digestive and Kidney Diseases (NIDDK) National Kidney Disease Education Program (NKDEP) (www.nkdep.nih.gov/). At a community level this proposal will focus on diabetes, a leading modifiable cause of CKD in the country.The impact of diabetes is widespread; however, presently racial/ethnic disparities exist in the burden of the impact of diabetes. African Americans and Latinos are twice as likely as their white counterparts to have type II diabetes (Centers for Disease Control and Prevention [CDC], 2004). Relative to other groups, African Americans and American Indians have higher rates of diabetes-related maladies such as amputations (CDC, 2004). There are two types of diabetes: type I (juvenile-onset diabetes) and type II (adult-onset diabetes). Risk factors of type I are not well understood, however, risk factors for type II diabetes include age, race/ethnicity, personal and family history, and lifestyle factors (CDC, 2004). Type II diabetes accounts for over 90% of all diabetes cases and in many cases, its onset is preventable (National Center for Chronic Disease Prevention and Health Promotion, 2004). Furthermore, a number of cases go undiagnosed until serious medical complications arise. For example, 11.4% of African American have diabetes, however, one-third of them do not know it (American Diabetes Association, n.d.). Many African-Americans are treated for serious complications related to diabetes that could have been prevented with early detection and appropriate treatment (American Diabetes Association, n.d.). For example, people with diabetes are at twice the risk of stroke or heart attack than those without the disease (American Diabetes Association, n.d.). As such, diabetes impacts communities of color the hardest. There have been a number of efforts to address diabetes. These efforts have included, but are not limited to, physical activity programs (Tudor-Locke et al., 2004), diabetes symptom management (Berg & Wadhwa, 2002; Schmidt, et al., 2003), diabetes screening initiatives at clinics (Anderson, et al., 2003), and patient education (Muhlhauser & Berger, 2002). The large-scale success of these programs has been limited by the relatively small venues for the intervention. Furthermore, the aforementioned types of programs have not typically been tailored to the specific needs of the racial/ethnic groups most afflicted by diabetes. What is needed is a strong community effort to address this important health issue. The mission of Healthy African American Families (HAAF) is to improve the health outcomes of the African American and Latino communities in Los Angeles County (specifically South Los Angeles) by enhancing the quality of medical care and advancing social progress through education, training, advocacy and collaborative partnering with community consumers, academia, researchers, and government. HAAF, along with Drew University, UCLA, and RAND, will address the issue of diabetes in Los Angeles through community-based participatory research methods. This enterprise will advance this mission by bringing stakeholders to the table in a community-driven planning and implementation process to address diabetes in Los Angeles. For such a vast and groundbreaking effort, a strong process and outcome evaluation that incorporates input from community participants and stakeholders, medical providers, and academic partners is needed. Empowerment evaluation (also known as community evaluation) is a relatively new type of evaluation that includes the participants at all stages of the evaluation, including the planning stage. It is defined by Fetterman (2001) as ?the use of evaluation concepts, techniques, and findings to foster improvement and self-determination? (p.3). In practice, empowerment evaluation includes stakeholders in the organization/community, participants/clients, staff members, and in the planning, implementation, and analysis of the evaluation. The overall goal is to improve the outcome or success of the program; the outcome will be enhanced by including individuals involved in the program at all levels of the evaluation. The success of empowerment evaluation lies in building trust with the community, having a shared understanding of what is to come from the evaluation, and recognizing the important contributions of the stakeholders (Fetterman, 1997). For this reason, all evaluation activities will be planned and implemented with input from the community by creating an evaluation team comprised of members representing the community, service providers, and academia. Empowerment evaluation and other community-based participatory research methods have been established to have a positive impact on the community; however, these methods have failed to examine the impact of participation on academic partners. The present study will augment existing literature by conducting an analysis of the impact of participation in the community-driven project on research ideas and professional ties on academic partners. It is hypothesized that academic partners will expand their professional networks and research to be more community-focused.
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