A fundamental goal of CBPR is to increase knowledge and understanding of a given phenomenon (i.e., address basic research questions) and facilitate solutions to problems facing communities (Minkler, 1997
; Minkler & Wallerstein, 2003
; Schensul, 1994
). Through our TBCCN assessment, we were able to understand factors that may contribute to addressing cancer health disparities by answering three primary research questions concerning (a) community partners’ expectations of the TBCCN collaboration, (b) defined cancer concerns and priorities, and (c) cancer education and training needs. This community partner assessment identified a clear need to increase availability and accessibility of services for underserved communities and highlighted distinct community capacity, education, and training needs.
Although collective data-gathering techniques (e.g., focused group interviews) might have yielded additional valuable information, we understood our community partners’ time and resource constraints for in-person interviews and deferred to their requests for telephone interviews. Interview responses revealed recurrent common themes. For example, an overarching and predominant theme from the current findings was the need to identify and make accessible services that benefit the community directly. The information obtained through this participatory assessment will serve as the basis of interventions, policy, and social change aimed at reducing the burden of cancer in underserved communities.
A focused, participatory approach in this assessment emphasized better understanding of the community partner's services, expectations, and contributions to the collaboration rather than focusing solely on deficiencies as in standard needs assessments. As stakeholders, community partners must be able to take part in the intervention process from problem definition, to implementation, to evaluation. This process helps build community capacity, foster ownership of data, and enhance collective community empowerment to effect positive social change, including attenuating health disparities in marginalized populations. This approach also allowed for identification and highlighting of positive community attributes to be brought into relief for addressing health disparities while also allowing community partners to define their most pressing perceived cancer education and training needs. This assessment approach also capitalized on the extensive knowledge of community partners as stakeholders, collaborators, and participants in the research.
Community Partner Expectations
Regarding partner expectations and potential contributions to the network, our findings have reinforced two important values of community–academic partnerships. First, TBCCN partners want to see improved access to services through a combination of new services provided by the TBCCN organization as a whole while also capitalizing on existing resources available through other partners within the TBCCN. Our findings are consistent with the cancer center's overall strategic plan for increasing access to underserved communities,which includes a focus on provision of culturally competent prevention and treatment and engaging community members in the process of intervention design, implementation, and evaluation to enhance outreach and screening effectiveness. In addition to enhancing its ongoing community outreach and education efforts, the cancer center has embraced these findings and is working on several new or expanded initiatives to improve access to a broad spectrum of prevention, screening, diagnosis, treatment, and aftercare services for medically underserved individuals.
Although the network embraces research, a clear and unequivocal goal is to improve access to clinical and preventive services. These findings align with the principles of distributive justice, wherein equal access to the benefits of health is a critical component of the social lives of community members. Thus, academic partners must frame and operationalize research objectives in ways that respect and achieve this goal—research that is important to and benefits the community directly.
Cancer Concerns and Priorities
To increase access to cancer-related services, the TBCCN is taking a multipronged approach. First, a referral directory identifying cancer education; preventive, screening, diagnosis, and treatment services; and follow-up care (support groups and other survivorship programs) and the logistics of how to access them will be developed and shared among current and future partners involved with medically underserved populations in the TBCCN geographic area. This initiative may ultimately lead to policy and evaluation research to assess the utility and efficacy of an established referral network on increasing access to and use of cancer-related services. Evaluations of the impact of the referral network directory and related efforts on reducing cancer health disparities have been carefully planned and integrated into these efforts. In addition, systematic GIS mapping of cancer-related resources in the tri-county area of the network is under way. Another NCI effort under way at the cancer center, the Patient Navigator Program (Freeman, 2006
), includes partners who have expressed many of the same sentiments about reducing disparities and meeting community needs. As such, the TBCCN and Navigator programs are in discussions to promote synergy in outreach, screening, policy, and research efforts.
Cancer Education and Training Needs
In the current assessment, the community partners identified education and training needs but also pointed out unique strengths as co-equal partners in the education collaboration. For example, some partners will contribute expertise in the development of literacy- and language-sensitive educational materials and will cofacilitate cancer education workshops when their expertise and resources allow. Current findings have directed the implementation of workshops on such topics as grant writing and development of low-literacy materials. It further led to the TBCCN's hosting of a Health Literacy town hall meeting in collaboration with the Florida Department of Health and Social Services.
The current findings also point to another important but underappreciated value of community–academic partnership—that communities have valuable experiences and resources that should be viewed as assets in these types of collaborations. Certainly, sustainability is more likely to occur when existing community assets and resources are recognized and community capacity is enhanced. Thus, the TBCCN network has identified several initiatives out of these findings. Another important perspective of our findings is the need to increase community-partner capacity through cancer education and training, and by enhancing information resources in the community. Addressing health disparities through community–academic partnerships requires significant capacity building for both community and academic partners.
The results of the current assessment provide many lessons that have direct implications for the TBCCN network and others involved in similar efforts nationwide. We summarize these lessons below and offer insight into how the network might proceed to develop practical solutions with direct implications for reducing health disparities. Despite the small number of respondents (n = 19), the current findings are robust in two ways: (a) the results are based on real-world cultural experiences of community partners committed to addressing the problem of cancer health disparities and (b) the potential solutions derive from similar levels of pragmatic enthusiasm to connect partners and maximize resources within the network. The network recognizes that no one organization alone can effectively address the complex challenges of health disparities without effective collaborations and partnerships.
Lessons Learned and Implications for Sustainability and Reducing Cancer Health Disparities
Much like any partnership endeavor (Kone et al., 2000
), the TBCCN collaboration has experienced many positive lessons and challenges worth noting. However, for the purposes of illustration three key lessons learned in implementing the community assessment are summarized below. Although not an all-exhaustive list, these highlighted perspectives show how the TBCCN network embraced CBPR as a solution to the challenges of reducing cancer disparities. In addition, tremendous synergy between and among partners has emerged as demonstrated by the number of new interorganizational collaborations taking place.
1. Community partners as stakeholders, collaborators, and research participants
Our collaborative efforts in defining tangible roles, representation, and ensuring the involvement of community partners were critical to the success of this assessment as documented elsewhere (Kone et al., 2000
). The involvement of community partners as collaborators and key informants in the assessment helped the network not only in understanding the partners’ expectations, perceived priorities, resources, and assets but also revealed a sharp focus by community partners on the most fundamental aspect of the collaboration—to develop initiatives of importance and direct benefit to community. The partners, serving as collaborators and key informants, remained thoughtful about the singular goal of reducing cancer health disparities by improving access to services. Therefore, as participants in the research (assessment) the partners were meaningfully engaged and steered the process in ways that could only maximize community benefit rather than only benefit the researchers or academic partner (Kone et al., 2000
). Nevertheless, community partners also recognized the need to balance community benefit and the need for academic rigor, and the contractual and regulatory requirements that at face value seem to detract from service delivery. Most important in this balancing process was the patience of community partners as the project faced inherent delays related to funding processes, institutional review, instrument development, and the iterative co-equal participatory processes of CBPR. Perhaps the two challenges requiring the greatest learning curve were the memorandum of understanding (MOU) and the institutional review. Specifically, the academic partner gained greater appreciation of the complex and intricate nature of executing MOUs in the context of a research project involving numerous and diverse community-based organizations. Similarly, the MOUs presented an additional intriguing conceptual paradox between contractual expectations versus voluntary participation in research. By virtue of signing the MOU, community partners were consenting and were obligated to participate in the assessment according to the terms of the MOU. Yet on the other hand, the assessment was considered to be research not operations, thus requiring informed consent process. Thus, the network collaboration was faced with the question whether participation of community partners in the assessment was truly and meaningfully voluntary. Without question, the community is best protected when the informed consent process is followed and voluntary participation is achieved. Ultimately, both issues (MOU and informed consent) were appropriately addressed through IRB review and approval of the parent grant and assessment as a research project and when voluntary participation was upheld.
2. Where does cancer prevention and research fit with community priorities?
To locate the priority of cancer health disparities prevention and research in the context of the community's most pressing priorities, the network developed a two-tier question. A basic objective was to determine how community partners perceived the significance of cancer in the bigger picture of community needs and priorities. This research supported our initial thinking that cancer health disparities was not a primary community priority. A key message from our findings is that the community wants cross-cutting solutions designed to address the fundamental access barriers fueling health disparities more broadly, not just cancer disparities. Thus, our findings pointing to the need for improved access to care require solutions that transcend the social, general health, and cancer-related sources of disparities. Essentially, the TBCCN collaboration will propose solutions that are rooted in a broader systemic context instead of narrowly directed fixes concerned only with reducing cancer disparities.
3. Should the academic partner (a comprehensive cancer center) do more in the collaborative?
Perceptions of imbalance of resources between the community and the academic partners must be addressed honestly, fairly, and equitably. This includes discussing and sharing of the financial resources awarded by the grant as well as bringing to bear other existing resources outside the funded partnership grant. Specific to this context, the cancer center has joined resources with partners to assist them in obtaining their own grants. Improving access to funding for partner organizations through assistance with grant writing and connection to funding opportunities can only benefit and boost the network resources. In fact, the TBCCN was awarded monies from the Prevent Cancer Foundation that was distributed to network partners to produce and distribute relevant cervical cancer education for their client populations. Hence the cancer center's commitment and investment in these resources and leveraging processes are critical to the sustainability of the partnerships.
Another critical aspect of increasing access to services is the commitment by the cancer center to facilitate navigation of community members to education, screening, diagnosis, treatment, and follow-up care. Certainly, this does not entail that the cancer center bears the sole responsibility; rather, the navigation model should include access to cancer center and community-based resources as appropriate. The TBCCN partnership aims to develop or improve linkages to services where they already exist (to be meaningfully accessible to community members) or create new opportunities through expanded partnerships and resources, including promoting synergy with the Patient Navigator Program in place at the cancer center. These paradigms of increasing accessibility, acceptability, and affordability are not new but certainly require careful reexamination and thoughtful implementation in the context of new partnerships such as the TBCCN.
Summary and Future Directions
The TBCCN network has benefited from the partner assessment and specific findings and recommendations for improving access to services and resources for reducing cancer disparities. The network is moving forward with training, cancer education initiatives, and cancer information stations to improve community capacity. Similarly, initiatives are under way to develop GIS maps and implement resource directories with the specific goal of improving access to cancer- related resources for underserved populations. Additional efforts are required to better delineate future initiatives and to evaluate and realize their impact. Consistent with the research goals of the network, pilot projects are now under way and possible projects are being considered to develop interventions to improve access to cancer-related services. The strong focus on community benefit, co-equal participation, commitment of new resources and initiatives by the cancer center and some community partners, and new interpartner collaborations strengthen the prospects of sustainability of the TBCCN collaborative beyond the current funding period.
Community benefit from cancer education and related resources and services and sustainable infrastructure are direct measures of community empowerment resulting from this funding opportunity. An important element of measuring long-term outputs and benefits is the implementation of an elaborate evaluation data collection system in which all partners may meaningfully contribute. As such, durable measures of success (reducing cancer health disparities) and community empowerment may become evident from evaluation data over time, as the network endures and benefits from the new infrastructure and organization and as collaborative efforts are realized. Although our current efforts have attempted to build and enhance community competencies for cancer education and control to reduce disparities, the network could benefit from a more systematic assessment and attention to the organizational competencies required of the participants to ensure an effective outcome. Thus, future network assessments and evaluation data should include attention to empowerment and community competencies (Fetterman & Wandersman, 2004
) required for effective and sustained impact on cancer disparities from both community and academic perspectives. This may entail collection of new data elements and delineation of additional items in the MOU documents.
In summary, the TBCCN partner assessment has provided practical lessons and outcomes for addressing cancer health disparities. Although much remains to be implemented and realized, the TBCCN network will use this assessment to move toward long-term community engagement in reducing cancer disparities.