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3. Working with Nontraditional Communities

As described in Chapter 1, communities vary greatly in their composition. New communication technologies mean that increasingly there are communities that do not conform to geographic boundaries and that collaboration can occur across great distances. These new kinds of communities and collaborations have their own unique challenges, illustrated in the following vignettes.

A. How do you maintain community engagement when the community is geographically distant from the researchers?

Deborah Bowen, PhD

Challenge

Distance poses a sometimes insurmountable barrier to open and accurate communication and engagement. People may feel left out if they perceive that distance is interfering with the connections between the research team and partners in the community. Maintaining involvement in multiple ways can solve this problem.

The principal investigator (PI) of an NIH-funded project was located at an academic institution, whereas community partners (Alaskan Natives and American Indians) were scattered through 40 sites across a large region in the U.S. Before the project began, the PI knew that even with an initial positive response, participation in the project would be hard to maintain across a multiyear project. She used two strategies to maintain contact and connection with the 40 community partners: refinements in organization and strategic personal visits.

Action Steps

The PI identified each community organization’s preferred method for communication and used that method for regular scheduled contacts. The methods were mostly electronic (telephone, email, or fax). Every scheduled contact brought a communication from the contact person in the community, no matter how insignificant. The community partners contributed to the communication, and if they had an issue they communicated it to the contact person. The communications were used to solve all kinds of problems, not just those that were research related. In fact, communications were social and became sources of support as well as sources of project information. This contact with the 40 community partners was continued for the duration of the six-year project.

The PI knew that relying on electronic communication alone was not sufficient. Thus, despite the vast distances between her institution and the community partners, the PI scheduled at least annual visits to see them. She asked each partner for the most important meeting or event of the year and tried to time the visit to attend it. The face-to-face interaction allowed by these visits was meaningful to the PI and the partners. The PI followed the cultural rules of visits (e.g., bringing gifts from their region to the community partners). Even with the barriers of space and time, engagement at a personal level made the research activities easier and more memorable for the partners.

Take-Home Messages

  • Take communication seriously, even if it is inconvenient to do so.
  • Keep notes or files on the people involved to remember key events.
  • Take into consideration the community partner’s perspective on what is important.

Reference

Hill TG, Briant KJ, Bowen D, Boerner V, Vu T, Lopez K, Vinson E. Evaluation of Cancer 101: an educational program for native settings. Journal of Cancer Education 2010;25(3):329-336.

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B. How do you engage a state as a community?

Geri Dino, PhD, Elizabeth Prendergast, MS, Valerie Frey-McClung, MS, Bruce Adkins, PA, Kimberly Horn, EdD

Challenge

West Virginia is the second most rural state in the U.S. with a population density of just 75 persons per square mile. The state consistently has one of the worst health profiles in the nation, including a disproportionably high burden of risk factors for chronic disease. The most notable is tobacco use (Trust for America’s Health, 2008). Addressing these chronic disease risk disparities was central to West Virginia University’s application to become a CDC-funded PRC. Early in the application process, senior leadership from the university engaged the state’s public health and education partners to create a vision for the PRC. Both then and now, the PRC’s state and community partners view West Virginia as having a culture of cooperation and service that embraces the opportunity to solve problems collectively. The vision that emerged, which continues to this day, reflected both the state’s need and a sense of shared purpose — the entire state of West Virginia would serve as the Center’s target community. Importantly, the academic-state partners committed themselves to develop the PRC as the state leader in prevention research by transforming public health policy and practice through collaborative research and evaluation. In addition, partners identified tobacco use as the top research priority for the PRC. These decisions became pivotal for the newly established Center and began a 15-year history of academic-state partnerships in tobacco control.

Action Steps

Several critical actions were taken. First, in 1995, West Virginia had the highest rate of teen smoking in the nation, and thus the academic-state partners deter-mined that smoking cessation among teens would be the focus of the Center’s core research project. Second, faculty were hired to work specifically on state-driven initiatives in tobacco research. Third, PRC funds were set aside to conduct tobacco-related pilot research using community-based participatory approaches. Fourth, state partners invited Center faculty to tobacco control meetings; the faculty were encouraged to provide guidance and research leadership. Partners also committed to ongoing collaborations through frequent conference calls, the sharing of resources, and using research to improve tobacco control policy and practice. In addition, a statewide focus for the PRC was reiterated. In 2001, the PRC formed and funded a statewide Community Partnership Board to ensure adequate representation and voice from across the state. This board provided input into the PRC’s tobacco research agenda. Partners collectively framed pilot research on tobacco and the original core research project, the development and evaluation of the N-O-T teen smoking cessation program.

Significantly, the Bureau for Public Health, the Department of Education Office of Healthy Schools, and the PRC combined their resources to develop and evaluate N-O-T. Soon after, the American Lung Association (ALA) learned about N-O-T and was added as a partner. The ALA adopted N-O-T, and the program is now a federally designated model program with more than 10 years of research behind it. It is also the most widely used teen smoking cessation program in both the state and the nation (Dino et al., 2008). The Bureau’s Division of Tobacco Prevention continues to provide resources to disseminate N-O-T statewide. The PRC, in turn, commits core funds to the Division’s partnership activities.

Additionally, the PRC and the Office of Healthy Schools collaborated to assess West Virginia’s use of the 1994 CDC-recommended guidelines on tobacco control policy and practice in schools. Partners codeveloped a statewide principals’ survey and used survey data to create a new statewide school tobacco policy consistent with CDC guidelines (Tompkins et al., 1999). Within a year, the West Virginia Board of Education Tobacco-Free Schools Policy was established by Legislative Rule §126CSR66. As collaborations grew, the state received funds from the 2001 Master Settlement Agreement; some of these funds were used by the Division of Tobacco Prevention to establish an evaluation unit within the PRC. This unit became the evaluator for tobacco control projects funded through the Master Settlement as well as by other sources. The evaluation unit has been instrumental in helping the programs improve their process of awarding grants by helping to develop a request for proposals (RFP) and by providing training in grant writing and evaluation to those applying for funds. The evaluators continue to develop tools and reporting guidelines to measure success. Through the years, this process has allowed the Division of Tobacco Prevention to identify the organizations best suited to carry out tobacco control efforts, and two highly successful, regional tobacco-focused networks have been created — one community based and the other school based. The Division, which consistently makes programmatic decisions based on evaluation reports and recommendations from the PRC, believes that the PRC-state collaboration has been one of the key partnerships leading to the many successes of the tobacco prevention and control program. In the words of Bruce Adkins, Director of the Division of Tobacco Prevention, the state-PRC evaluation partnerships:

ensure that our tobacco prevention and cessation efforts are founded in science, responsive to communities, and accountable to state policy-makers. Based on PRC guidance and CDC Best Practices collaboration, we only fund evidence-based programs, and we continuously quantify and qualify every intervention we fund. Without the PRC, our division would have far fewer successes to share with the nation. (personal communication with Mr. Adkins, September 2008)

Take-Home Messages

  • There must be an ongoing commitment to the partnership, and it must be reinforced on a continuing basis.
  • Partners need to establish a set of shared values, such as recognizing the importance of a statewide focus, using CBPR approaches, and emphasizing the importance of research translation.
  • Partners must commit to shared decision making and shared resources.
  • Roles and responsibilities should be defined based on complementary skill sets.
  • Partners must establish mutual respect and trust.

References

Dino G, Horn K, Abdulkadri A, Kalsekar I, Branstetter S. Cost-effectiveness analysis of the Not On Tobacco program for adolescent smoking cessation. Prevention Science 2008;9(1):38-46.

Tompkins NO, Dino GA, Zedosky LK, Harman M, Shaler G. A collaborative partnership to enhance school-based tobacco control policies in West Virginia. American Journal of Preventive Medicine 1999;16(3 Suppl):29-34.

Trust for America’s Health. West Virginia state data. Washington (DC): Trust for America’s Health; 2008.

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