A Community-Based Approach to Cervical Cancer Prevention: Lessons Learned in Rural Guatemala.

BACKGROUND: One international and three local organizations developed the Santa Ana Women's Health Partnership (SAWHP) to address cervical cancer in Santa Ana Huista, Huehuetenango, Guatemala. This paper describes the structure, outcomes, and lessons learned from our community partnership and program. METHODS: The community partnership developed a singlevisit approach (SVA) program that guided medically underserved women through screening and treatment of cervical cancer. LESSONS LEARNED: The program promoted acceptability of SVA among rural women by engaging local female leaders and improving access to screening services. The program's approach focused on maximizing access and generated interest beyond the coverage area. Distrust among the community partners and weak financial management contributed to the program's cessation after 4 years. CONCLUSIONS: The SAWHP design may guide future implementation of cervical cancer screening programs to reach medically underserved women. Open, ongoing dialogue among leaders in each partner institution is paramount to success.

Community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care.

Concern over the need for effective and accessible healthcare for individuals with advanced chronic illness has drawn attention to the significant gaps in our knowledge of palliative medicine. To advance our understanding of this field, community-based participatory research (CBPR) is proposed as a tool for future research initiatives. This paper offers a rationale for how CBPR may be employed to address specific gaps in palliative care research. Several examples where this approach has been used previously are described, and potential obstacles to implementing this research method are delineated. Despite challenges to incorporating CBPR to palliative care research, this approach holds substantial potential to advance our current understanding of the field and promote sensitivity for future programs, practices and policies.

Challenges With Research Contract Negotiations in Community-Based Cancer Research.

PURPOSE: Community-based research programs face many barriers to participation in clinical trials. Although the majority of people with cancer are diagnosed and treated in the community setting, only roughly 3% are enrolled onto clinical trials. Research contract and budget negotiations have been consistently identified as time consuming and a barrier to participation in clinical trials. ASCO's Community Research Forum conducted a survey about specific challenges of research contract and budget negotiation processes in community-based research settings. The goal was to ultimately identify potential solutions to these barriers. METHODS: A survey was distributed to 780 community-based physician investigators and research staff. The survey included questions to provide insight into contract and budget negotiation processes and perceptions about related barriers. RESULTS: A total of 77% of the 150 respondents acknowledged barriers in the process. Respondents most frequently identified budget-related issues (n = 133), inefficiencies in the process (n = 80), or legal review and negotiation issues (n = 70). Of the respondents, 44.1% indicated that contract research organizations made the contract negotiations process harder for their research program, and only 5% believed contract research organizations made the process easier. The contract negotiations process is perceived to be impeded by sponsors through underestimation of costs, lack of flexibility with the contract language, and excessive delays. CONCLUSION: Improving clinical trial activation processes and reducing inefficiencies would be beneficial to all interested stakeholders, including patients who may ultimately stand to benefit from participation in clinical trials. The following key recommendations were made: standardization of contracts and negotiation processes to promulgate transparency and efficiencies, improve sponsor processes to minimize burden on sites, create and promote use of contract templates and best practices, and provide education and consultation.

Research for improved health: variability and impact of structural characteristics in federally funded community engaged research.

BACKGROUND: Although there is strong scientific, policy, and community support for community-engaged research (CEnR)-including community-based participatory research (CBPR)-the science of CEnR is still developing. OBJECTIVE: To describe structural differences in federally funded CEnR projects by type of research (i.e., descriptive, intervention, or dissemination/policy change) and race/ethnicity of the population served. METHODS: We identified 333 federally funded projects in 2009 that potentially involved CEnR, 294 principal investigators/project directors (PI/PD) were eligible to participate in a key informant (KI) survey from late 2011 to early 2012 that asked about partnership structure (68% response rate). RESULTS: The National Institute on Minority Health & Health Disparities (19.1%), National Cancer Institute (NCI; 13.3%), and the Centers for Disease Control and Prevention (CDC; 12.6%) funded the most CEnR projects. Most were intervention projects (66.0%). Projects serving American Indian or Alaskan Native (AIAN) populations (compared with other community of color or multiple-race/unspecified) were likely to be descriptive projects (p<.01), receive less funding (p<.05), and have higher rates of written partnership agreements (p<.05), research integrity training (p<.05), approval of publications (p<.01), and data ownership (p<.01). AIAN-serving projects also reported similar rates of research productivity and greater levels of resource sharing compared with those serving multiple-race/unspecified groups. CONCLUSIONS: There is clear variability in the structure of CEnR projects with future research needed to determine the impact of this variability on partnering processes and outcomes. In addition, projects in AIAN communities receive lower levels of funding yet still have comparable research productivity to those projects in other racial/ethnic communities.

A method for achieving reciprocity of funding in community-based participatory research.

BACKGROUND: The St. Louis Komen Project was conceived to address disparities in breast cancer treatment and outcomes between African-American and White women in St. Louis, Missouri. Our goal was to apportion tasks and funding through a process to which all researcher partners had input and to which all could agree, thus eliminating institutionalized inequalities. METHODS: This paper describes the collaborative process and resulting division of responsibilities, determination of costs, and ultimate allocation of funds and resources, as well as the documentation employed to achieve funding reciprocity and equal accountability. RESULTS: Both communication and documentation are critical. Although the Memoranda of Understanding employed are not a panacea, they codify roles and expectations and promote trust. The process of developing financial transparency set the tone for subsequent steps in the research process. CONCLUSIONS: The exhaustive planning process and project-specific procedures developed by its partners have helped the project foster reciprocity, facilitate participation, and equitably distribute resources.

Sustaining CBPR partnerships to address health disparities in times of economic instability.

In unstable economic environments, CBPR partnerships in underserved communities may face unanticipated obstacles that threaten success and sustainability. This report describes challenges experienced by HealthLink, a CBPR partnership to address cancer disparities in Queens, N.Y., and how HealthLink adapted. Recommendations for designing CBPR partnerships to overcome unexpected challenges are provided.

Connecting community with campus to address cancer health disparities: a community grants program model.

BACKGROUND: With growing interest in the CBPR approach to cancer health disparities research, mechanisms are needed to support adherence to its principles. The Carolina Community Network (CCN), 1 of 25 Community Network Programs funded by the National Cancer Institute (NCI), developed a model for providing funds to community-based organizations. OBJECTIVES: This paper presents the rationale and structure of a Community Grants Program (CGP) model, describes the steps taken to implement the program, and discusses the lessons learned and recommendations for using the grants model for CBPR. METHODS: Three types of projects-cancer education, implementation of an evidence-based intervention, and the development of community-academic research partnerships-could be supported by a community grant. The CGP consists of four phases: Pre-award, peer-review process, post-award, and project implementation. RESULTS: The CGP serves as a catalyst for developing and maintaining community-academic partnerships through its incorporation of CBPR principles. CONCLUSIONS: Providing small grants to community-based organizations can identify organizations to serve as community research partners, fostering the CBPR approach in the development of community-academic partnerships by sharing resources and building capacity.

A small grants program to involve communities in research.

A key tenet of community-based participatory research is that communities be involved in all facets of research, from defining the problem to identifying solutions, to assisting in the research, and to participating in the publication of results. In this study, we instituted a small grants program for community participation. A Request for Applications (RFA) was developed and circulated widely throughout the Valley. The RFA sought proposals to address health disparities in cancer education, prevention, and treatment among Hispanics living in the Valley. Funds available were $2,500.00-3,500.00 for 1 year's worth of work. To help evaluate the progress of the RFA community projects according to the perspectives of the Community Advisory Board (CAB), an open-ended, semi-structured interview was created and administered by a former staff member to CAB members. In 4 years, ten small grants proposed by community members were funded. Funds allocated totaled approximately $25,000. Interviews with CAB members indicated that the RFA program was perceived positively, but there were concerns about sustainability. Our community grants program resulted in the implementation of several novel cancer prevention programs conducted by a variety of community organizations in the Lower Yakima Valley.