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pchp.press.jhu.edu © 2012 The Johns Hopkins University Press

Work-In-Progress & Lessons Learned

Developing an Urban Community–Campus Partnership: Lessons Learned in Infrastructure Development and Communication

Dorothy F. Parker, MHS1, Noella A. Dietz, PhD1,2, Monica Webb Hooper, PhD1,3, Margaret M. Byrne, PhD1,2, Cristina A. Fernandez, MSEd2,

Elizabeth A. Baker, MS3, Marsha S. Stevens, MPH1, Antoine Messiah, MD2,5, David J. Lee, PhD1,2, and Erin N. Kobetz, PhD, MPH1,2,4

(1) University of Miami, Sylvester Comprehensive Cancer Center; (2) University of Miami Miller School of Medicine, Department of Epidemiology and Public Health; (3) University of Miami, Department of Psychology; (4) University of Miami Jay Weiss Center for Social Medicine and Health Equity; (5) Institut National de la Santé et de la Recherche Médicale (INSERM)

Submitted 29 June 2011, revised 20 January 2012, accepted 18 April 2012.

To help reduce health disparities in diverse South Florida communities, a local university-based cancer center developed infrastructure to sup-

port community-based research informed by principles of CBPR and community engagement.1-4 The cancer center’s infrastructure includes a shared resource, the Disparities and Community Outreach Core that consists of a CBPR faculty research director and staff with expertise in research methodology. The core established a network of community advisory boards (CAB) that provide a community perspec-tive in planning, implementing, and disseminating research findings. This paper describes our experience with one CAB that was engaged in conducting a household survey to better

AbstractBackground: A low-income, African American neighbor-hood in Miami, Florida, experiences health disparities including an excess burden of cancer. Many residents are dis enfran chised from the healthcare system, and may not participate in cancer prevention and screening services.

Objective: We sought to describe the development of a part-ner ship between a university and this community and lessons learned in using a community-based participatory research (CBPR) model.

Methods: To better understand the community’s health behaviors and status, a randomized door-to-door survey was conducted in collaboration with a community partner.

Lessons Learned: This collaboration helped foster a mutual understanding of the benefits of CBPR. We also describe challenges of adhering to study protocols, quality control, and sharing fiscal responsibility with organizations that do not have an established infrastructure.

Conclusions: Understanding the organizational dynamics of a community is necessary for developing a CBPR model that will be effective in that community. Once established, it can help to inform future collaborations.

KeywordsCommunity-based participatory research, community partnerships, health disparities, power sharing, process issues, cancer

understand the community’s health behaviors and barriers to care. The community is primarily African American. The partnership is an expansion of our experience in an adjacent Haitian-American community.5,6 We discuss lessons learned in the developmental phase of a community–campus part-nership in a low-resource neighborhood and compare our experience with previously reported partnerships.

BAcKground

The community

The community is located in an unincorporated area within the City of Miami, Florida. It covers approximately

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6 square miles and has approximately 44,000 residents.7 The majority of residents (87%) are African American. This com-munity has been affected by racial segregation and political and economic disenfranchisement since the 1920s.8,9 The median annual family income for the area is $26,255; 43% of families have incomes below the federal poverty level; and the unemployment rate is 34%.10 Residents shoulder a dispropor-tionate burden of diseases, including cancer. They experience a high percentage of late-stage diagnosis for breast, cervical, and colorectal cancers.11 Spatial analyses using geocoded cancer incidence data from the Florida Cancer Data System found clusters of significantly higher-than-expected incidence and mortality rates for lung, oral cavity, and cervical cancers.12,13 We supplemented these data with interviews of 17 community leaders who identified HIV/AIDS, diabetes, and cancer as the area’s main health concerns. These findings, in addition to those from another Florida community, the Tampa Bay Community Health Network, helped to guide strategies.14 These health disparities likely reflect social determinants of health such as lack of local employment opportunities, limited transportation, no health insurance coverage, limited access to healthcare, and distrust of medical professionals.15 The medi-cal care resources in this community are limited to a federally qualified health center and a few private physicians. Most residents seek care at the county’s public hospital system.16,17

community Advisory Board

The CAB was established in 2008. Representatives of local organizations and community leaders identified through key informant interviews were invited to be on the CAB to repre-sent the community’s interests on future research initiatives.18 The CAB currently includes representatives from 10 com-munity-based agencies, faith-based organizations, and local service and health care providers. The board meets bimonthly at a local community center. Membership is open to any organization interested in health and cancer prevention. The initial meetings included a dialogue between academic and community partners about the purpose and role of the board and about CBPR principles. The board developed a mission statement that included four goals: (1) Address health dispari-ties, (2) raise awareness about health, disease prevention, and community resources, (3) increase community networks and resources, and (4) build the capacity to support social change.

As part of the initial dialogue, we discussed prior negative experiences between this community and the university. CAB members felt that the community was not adequately involved in research and that research results were not shared or used for the community’s benefit. We emphasized our commitment to CBPR principles, reestablishing trust, and to a long-term partnership. We acknowledged differences in priorities for the community and for the university, but mutually agreed to work together with a focus on cancer prevention, with an ultimate goal of improving health and quality of life.

The CAB determined the geographic boundaries for this study. After reviewing demographic data, the CAB decided to focus on census tracts that are primarily English speaking and African American. Setting boundaries also enabled us to compile quantitative parameters for planning future interven-tions and grant applications.

MeThodsThe CAB agreed to collaborate on a pilot health survey

to obtain data on perceived local needs. Together we devel-oped a questionnaire to assess residents’ perceptions about health, health behaviors, and access to care. Because we are part of a cancer center, our primary focus was cancer. The CAB members agreed to this focus and to specific attention to tobacco use because they reported a very high rate of smoking in their community. This complemented university data that found high rates of tobacco-related cancers in this area.13 The CAB advised against conducting a mailed or telephone survey because they predicted a low response rate. Additionally, rather than sample households from the entire community, they suggested conducting the survey in the area’s largest public housing development and hiring residents to conduct the interviews. Although results from the housing developing would not be statistically representative of the community as a whole, the approach increased the feasibility of data collection and obtaining a high compliance rate for this pilot study.

An interviewer-administered questionnaire included multiple choice and open-ended questions. The questions and the verbal consent script were developed collaboratively between the researchers and the CAB. We used questions from the National Health and Nutrition Examination Survey19 and the Behavioral Risk Factor Surveillance Survey20 to allow for comparisons with state and national data. The survey included

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questions about cancer screening behaviors (Pap tests, mam-mograms, and colorectal cancer screening) and tobacco use. The CAB added questions about Internet and telephone access of the residents to help them identify barriers to other social resources and services. The university’s Institutional Review Board approved the protocol, questionnaire and con-sent script. Results of the survey will be presented in future publications.

Following CBPR the principle of community financial engagement, the CAB was asked to select a fiscal partner for this project. They suggested the tenant council for the housing project in which the survey was conducted. The tenant council, a nonprofit organization and active CAB member, agreed to serve in this capacity. A subcontract and memorandum of understanding between the tenant council and the university were developed. The university issued a lump sum check to the tenant council from which they paid project staff salaries and survey-related expenses.

To make residents aware of the survey, the tenant council distributed flyers to all households explaining that interviewers would be knocking on some doors to conduct a survey about health. Based on suggestions from the CAB, six residents of the housing project were hired. Of the six, five were trained to conduct interviews, two were trained for data entry, and one was trained to be the on-site study coordinator. The training covered research methods, ethics and human subjects’ protection, and included role-playing with the consent script, the questionnaire, and practice using the log sheets and gift card distribution record keeping. Three 4-hour training sessions were held at the community center by Disparities and Community Outreach Core staff using a modified training curriculum developed for another study.5 We also provided an overview of cancer, including risk factors, prevention, and screening.

Of the 753 households in the housing project, 250 were randomly selected. Each interviewer was assigned 50 addresses. They were also allowed to interview five people who were not on the list. This additional convenience sample enabled the interviewers to respond to requests to participate from people who were not from the selected households. Verbal consent was obtained before each interview was conducted. Interviewers recorded responses. Upon completion of each interview, the interviewee received a receipt for a gift card

and was told they could collect the gift card at the community center office. The CAB and tenant council members recom-mended this as being safer than having the interviewers carry the cards. At the community center office, the coordinator kept a log of gift cards matched to the specific addresses. Interviewers could try up to three times to interview an adult in each household. The community workers were paid based on the number of surveys completed.

All of the 250 selected households participated in the survey. The additional 25 convenience sample interviews were included in the analysis. Of the 275 surveys, 55 were excluded owing to incomplete or inaccurate data. Therefore, the final analysis was based on 220 interviews. The community partners’ explanation for the high compliance rate was the familiarly of the interviewers and the gift card incentive. The interviewers, who were residents of the housing project, were able to visit the selected households when people were home, or they could easily return when it was more convenient.

Lessons LeArnedChallenges experienced by others academic institutions

that collaborate with community organizations have been documented.21-23 On the university side, challenges include working with grant requirements and deadlines, time required for review by the human subjects’ protection office, and university administrative policies. Community challenges can include infrastructure limitations, leadership issues, and inter-organizational politics. The lessons discussed herein primarily reflect the perspective of the university although the community’s perspective is included. We asked the two CAB members most involved with the project to contribute to this manuscript and we shared drafts with them throughout the writing process. However, they preferred to provide verbal feedback and asked us to include their comments.

hiring community residents as Interviewers

The leadership of the tenant council selected six residents of the public housing project who had experience in data collection and community projects for this study. Providing employment in a community with a high unemployment rate was perceived of as a benefit to the community. The CAB members believed that the workers’ familiarity and rapport within the community would contribute to the willingness of

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residents to participate in the household survey. This proved to be the case. However, interpersonal dynamics and familial relationships created some tension, as reported by the study coordinator. Several interviewers reported being uncomfort-able explaining why people who did not live in randomly selected households could not participate and receive the incentive. We attempted to mediate this by allowing each interviewer to administer the survey to five people who did not live in one of the randomly selected households. Additional training and role-playing about the reasons for random sampling may have helped the interviewers to explain the study methodology. However, explaining that randomization produces results that are statistically representative and allow research findings to be more scientifically valid may not be a sufficient explanation.

compensating community Workers in Public housing

Because the community workers were public housing residents, any income they receive increases the amount of rent they pay. To avoid this financial burden, we learned that payment by the resident tenant council could be considered a stipend, not income, thereby avoiding rent increases. Despite this benefit, and owing to the financial management challenges described below, we did not continue using this model for subsequent projects. We changed to hiring and paying community workers through the university. Despite the potential increase in rent, the workers said they preferred being temporary university employees because they would receive paychecks on time and avoid potential conflicts with their fellow residents. The workers also felt that an established affiliation with the university was a benefit to them for future employment opportunities. For future studies, we hope to develop a partnership with a community agency that is quali-fied to manage the financial arrangements and benefits from sharing financial management.

Training and Quality control

The community workers were trained and supervised by the university staff from the Disparities and Community Outreach Core using a training manual developed for this project. We also met with the community workers weekly to discuss problems and to review the study logs. At the conclu-sion of the survey, we found that we should have allocated

more time for training. In hindsight, and as suggested by CAB members after the study was completed, we should have met with each worker individually in addition to a group. This would have allowed us to review each completed survey thoroughly and to have the interviewer correct any discrepan-cies immediately, going back to the household if necessary. One of our resource limitations was that this survey was an add-on to a funded project and we did not have designated, grant-funded, full-time staff. We did not anticipate the level of quality control needed, for example, daily monitoring, at least for the first few weeks. Although this was designed as a pilot study, we underestimated the time and staff needed.

In addition to being trained as interviewers, one com-munity worker was trained as study coordinator and two were trained in entering survey results into an online data base. Our intent was to provide maximum employment and build the capacity and skills of community residents rather than have university staff do these tasks. However, we underestimated the supervision and time needed to ensure accurate record keeping and data entry. Neither did we anticipate problems with Internet access at the community’s computer center. A realistic assessment of computer skills and access may help to balance the use of university resources with the benefit of hiring community residents for all study tasks.

Financial Management

CBPR principles encourage involvement of the commu-nity in finances and power sharing. To optimize the sharing, however, the financial infrastructure of the community partner needs to be considered. The community partner in this study agreed to the tasks outlined in the memorandum of under-standing, which we discussed in detail before signing. The fiscal responsibility included writing biweekly checks for the community workers and using the funds only for study-related expenses. This responsibility and monitoring of how the funds were used became more of a burden than a benefit to both parties. Feedback from CAB members after the study ended reinforced the importance of working with an organization that has the experience to handle funds and other respon-sibilities. The community partner’s practices with checking accounts, online banking, and keeping records should be con-sidered. Training on financial management may be beneficial, but should be planned with sensitivity to current practices.

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communication

Communication between university personnel and com-munity workers was a challenge at times. Some community workers did not attend meetings and we were not always able to reach all of them; a few did not have reliable telephone or email service. Scheduling more frequent meetings (at least three times a week) at times mutually agreed upon at the beginning of the project may have improved communication and resulted in better quality control.

Building Trust

Developing trust between a university and a community is essential for any community-based research endeavor.24,25 We acknowledged these issues at the initial public forum and at subsequent CAB meetings, and emphasized our commitment to using CBPR methods to the greatest extent possible in plan-ning, implementing, and disseminating research findings.23 Feedback from CAB members has been supportive of this approach and they continue to express their commitment to our partnership. We continue to work transparently and in partnership with the CAB. Since the pilot study was con-ducted, we have worked with this community on four research projects. The CAB has opened doors to local organizations and resident groups that may not have otherwise been receptive to the university’s involvement in their community.

A successful community–campus partnership also involves the university addressing the community’s needs. Over the past 3 years, we have responded to requests from the community by preparing and distributing a resource direc-tory, coordinating health fairs, and providing educational materials about cancer risks and prevention. We have offered residents free psychological interventions for people who have experienced recent traumatic events such as domestic violence and crime, areas that the community mentioned as major con-cerns. In addition, we have supported community-initiated efforts to apply for funding for cancer prevention, exercise, and nutrition grants.

concLusIon

This CBPR experience offers researchers an understanding of and ability to anticipate challenges when establishing a

research partnership in an economically disadvantaged area. In comparison with studies where CBPR methodology was used to conduct interventions,26-28 our “lessons learned” were based on the early phase of developing a partnership. Our goal was to mobilize and engage the community in the early phases of assessing health needs and establishing an infra-structure for future interventions. As in other CBPR proj-ects, there was historical distrust of university researchers. We acknowledged this up front with the CAB and had open discussions about how to avoid this in the future. Although the CAB has expressed frustration with the institutional review board and other administrative delays, overall they express satisfaction and excitement with our partnership and progress to date. As with other studies, we dealt with issues related to equity, finances, and power differentials, particularly because the study was conducted in a public housing project where income and employment levels are low.28 We continue to work through these challenges. We have learned to be realistic about the capacity of the community partner to assume financial responsibility and to determine when it may be preferable for responsibility to remain with the university. We learned the importance of feedback from the CAB and the local knowledge they offered. Although the university’s expertise in project management may help to secure future research funding, working with community partners to build their administrative capacity may help to sustain a partnership that is beneficial to both parties. Being open to effective forms of communication between university staff and community workers is also important, for example, not relying solely on email and telephone messages. Allocating sufficient time for quality control will also help to improve the outcome of research projects. Inherent limitations of research and the issue of individual versus community benefit should be discussed with the community at the beginning of the partnership. The university team also needs to understand the micro-level political and power structure relationships, and how they can affect interactions with an organization such as a large local university. This partnership is ongoing and commitment on both sides has been openly expressed. We continue to work together to address health issues, such as cancer, even in light of the serious socioeconomic challenges residents face on a daily basis.

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AcKnoWLedgMenTsThe authors thank the members of the Liberty City

Com mu nity Health Advisory Board for their assistance and support. We also acknowledge the University of Miami Sylvester Comprehensive Cancer Center’s Disparities and

Community Outreach Core for their services. This research was partially supported by the Florida Department of Health James and Esther King Biomedical Grants Program Research Grant (RPG 1KG07-33979) and Team Science Program Grant (06TSP-02).

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