Adherence and retention in clinical trials: a community-based approach.

BACKGROUND: The Community Health Advisor (CHA) model has been widely used to recruit rural and low-income, mostly African American women into clinical and behavioral research studies. However, little is known about its effectiveness in promoting retention and adherence of such women in clinical trials. METHODS: The Community-Based Retention Intervention Study evaluated the effectiveness of a community-based intervention strategy using the CHA model and the empowerment theory to improve the retention and adherence of minority and low-income women in clinical trials. The research strategy included the training and use of the volunteer CHAs as research partners. The target population included women participating in the University of Alabama at Birmingham clinical site of the Atypical Squamous Cells of Undetermined Significance-Low-Grade Squamous Intraepithelial Lesion (ASCUS-LSIL) Triage Study (ALTS), a multicenter, randomized clinical trial. Two communities in Jefferson County, Alabama, that were matched according to population demographics were identified and randomly assigned to either an intervention group or a control group. Thirty community volunteers were recruited to be CHAs and to implement the intervention with the ALTS trial participants. In total, 632 ALTS participants agreed to participate in the project, including 359 in the intervention group, which received CHA care, and 273 in the control group, which received standard care. RESULTS: Adherence rates for scheduled clinic visits were significantly higher in the intervention group (80%) compared with the control group (65%; P < .0001). CONCLUSIONS: The results indicate that volunteer CHAs can be trained to serve as research partners and can be effective in improving the retention and adherence of minority and low-income women in clinical trials.

Using community-based participatory approaches to mobilize communities for policy change.

The Racial and Ethnic Approaches to Community Health (REACH) Alabama Breast and Cervical Cancer Coalition used community-based participatory research principles to address breast and cervical cancer disparities among Alabama's most vulnerable African American communities. With funding from the Centers for Disease Control and Prevention, the Alabama Breast and Cervical Cancer Coalition implemented a multilevel action plan, which entailed disseminating evidence-based strategies to community organizations interested in addressing cancer and other health disparities. Based on the Alabama Breast and Cervical Cancer Coalition's technical assistance on advocacy, an independent, community-led coalition was formed. This article uses a case study approach to document the steps taken by this empowered coalition to mobilize their community to impact cancer disparities using community-based participatory research principles as a tool to change tobacco and breast and cervical cancer legislation.

Planning and implementation of a participatory evaluation strategy: a viable approach in the evaluation of community-based participatory programs addressing cancer disparities.

Community-based participatory research (CBPR) has been posited as a promising methodology to address health concerns at the community level, including cancer disparities. However, the major criticism to this approach is the lack of scientific grounded evaluation methods to assess development and implementation of this type of research. This paper describes the process of development and implementation of a participatory evaluation framework within a CBPR program to reduce breast, cervical, and colorectal cancer disparities between African Americans and whites in Alabama and Mississippi as well as lessons learned. The participatory process involved community partners and academicians in a fluid process to identify common ground activities and outcomes. The logic model, a lay friendly approach, was used as the template and clearly outlined the steps to be taken in the evaluation process without sacrificing the rigorousness of the evaluation process. We have learned three major lessons in this process: (1) the importance of constant and open dialogue among partners; (2) flexibility to make changes in the evaluation plan and implementation; and (3) importance of evaluators playing the role of facilitators between the community and academicians. Despite the challenges, we offer a viable approach to evaluation of CBPR programs focusing on cancer disparities.

The Deep South Network for cancer control. Building a community infrastructure to reduce cancer health disparities.

Given the recent advances in cancer treatment, cancer disparity between whites and African-Americans continues as an unacceptable health problem. African-Americans face a considerable disparity with regard to cancer incidence, survival, and mortality when compared with the majority white population. On the basis of prior research findings, the Deep South Network (DSN) chose to address cancer disparities by using the Community Health Advisor (CHA) model, the Empowerment Theory developed by Paulo Freire, and the Community Development Theory to build a community and coalition infrastructure. The CHA model and empowerment theory were used to develop a motivated volunteer, grassroots community infrastructure of Community Health Advisors as Research Partners (CHARPs), while the coalition-building model was used to build partnerships within communities and at a statewide level. With 883 volunteers trained as CHARPs spreading cancer awareness messages, both African-Americans and whites showed an increase in breast and cervical cancer screening utilization in Mississippi and Alabama. In Mississippi, taking into account the increase for the state as a whole, the proportion that might be attributable to the CHARP intervention was 23% of the increase in pap smears and 117% of the increase in mammograms. The DSN has been effective in raising cancer awareness, improving both education and outreach to its target populations, and increasing the use of cancer screening services. The National Cancer Institute has funded the Network for an additional 5 years. The goal of eliminating cancer health disparities will be pursued in the targeted rural and urban counties in Mississippi and Alabama using Community-Based Participatory Research. Cancer 2006. (c) 2006 American Cancer Society.

Addressing disparities through coalition building: Alabama REACH 2010 lessons learned.

Community-based coalitions have become accepted vehicles for addressing complex health problems. Few articles have described the challenges and lessons learned from such a process. The purpose of this paper is two-fold: 1) to describe the processes involved in building and maintaining the REACH 2010 Alabama Breast and Cervical Cancer Control Coalition (ABCCCC) and 2) to highlight the lessons learned from this venture. Principles from community-based participatory research were used 1) to establish and maintain the ABCCCC, 2) to build coalition capacity, and 3) to develop breast and cervical cancer interventions. Over 95% of our coalition has been maintained over a 7-year period. The ABCCCC received a total of 17 breast and cervical cancer mini-grants. Adherence to ground rules such as exhibiting respect and trust and practicing open communication helped to solidify our partnership. Lessons learned from the ABCCCC can provide others with an in-depth exploration of the processes involved in coalition formation and maintenance.

Community health advisors as research partners: an evaluation of the training and activities.

The feasibility of training large numbers of community health advisors as research partners (CHARPs) was evaluated using talking circles data and cancer activity questionnaires and logs. The talking circles data indicated that the CHARPs (n=108) valued their training and believed they learned necessary research partner skills. A review of contacts (n=7,956) provided evidence that CHARPs (n=883) could work as a team to deliver a variety of services over time to the community. The findings suggested that implementing a large scale intervention with CHARPs has the potential to increase the dissemination of cancer information and to reduce cancer disparities.

The development of a community action plan to reduce breast and cervical cancer disparities between African-American and White women.

The purpose of this project was to establish a coalition of academic, state, and community-based organizations to develop a community action plan (CAP) to eliminate breast and cervical cancer morbidity and mortality disparities between African-American (AA) and Caucasian women. The project targeted rural and urban low-income AA women in Alabama. Based on the logic model, community capacity building was implemented, followed by the development of a community-driven CAP. For community capacity building, a coalition comprising 12 organizations was established, and a network of 84 community volunteers was formed. Community needs assessments identified 3 levels of barriers to breast and cervical cancer screening: 1) individual, 2) community systems, and 3) healthcare provider. Based on these findings, a community-driven CAP was developed. Our results indicate that a coalition of diverse organizations can partner and develop CAPs to improve the health of their communities.

Retention of under-served women in clinical trials: a focus group study.

More information is needed to understand how women view their participation in clinical trials. As part of the formative evaluation phase of a 4-year National Cancer Institute funded study, researchers associated with the "Community Retention Intervention Study" (CRIS) conducted focus groups to identify additional data on the underlying issues regarding the retention and compliance of under-served women in clinical trials. Six focus groups were conducted: 3 were age-based, and 3 involved participants of the Women's Health Initiative (WHI) clinical trial component in Birmingham, Alabama. A total of 62 women, between 18 and 87 years of age, participated in the sessions: 79% were African-American and 52% reported incomes below dollar 20,000. The qualitative data analysis revealed that women were more inclined to participate in a clinical trial if they, or a family member, would benefit. Non-compliance with study protocols was generally a result of complications or unwanted side effects of treatments. Focus group data were used to develop retention and compliance strategies for the CRIS study. Findings suggest that focus group data can be used effectively to develop retention and compliance strategies specific to under-served women.