Authors

  1. Wynn, Theresa A. PhD
  2. Taylor-Jones, Monica M. PhD, MPH
  3. Johnson, Rhoda E. PhD
  4. Bostick, Pamela B. BS
  5. Fouad, Mona MD

Abstract

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.

 

Article Content

THE Alabama Racial and Ethnic Approaches to Community Health (REACH) project, under the leadership of the Alabama Breast and Cervical Cancer Coalition (ABCCC), served as an example of a 10-year community-based collaborative built upon mutual respect; trust; and open communication between academicians, local and state governments, and faith-based organizations to jointly address breast and cervical cancer disparities among Alabama's most vulnerable African American communities.1 The collaborative and equitable involvement of various stakeholders in the ABCCC exemplified the characteristics of community-based participatory research (CBPR).2 Community-based participatory research builds upon the knowledge, research, and actions of each member of the collaborative to achieve social change.2 Although CBPR principles are well documented in the social science literature, the CDC REACH initiative adopted similar concepts, modifying the research arm for the term "approaches." The term approaches was substituted because REACH primarily seeks evidence and practice-based approaches to community health rather than a research-oriented methodology. Therefore, the REACH initiative utilizes the 9 principles of CBPR2,3 (Table 1) and embraces the phrase community-based participatory approaches to community health.

  
Table 1 - Click to enlarge in new windowTable 1. Coalition's Application of CBPR Principles to Change Tobacco and Breast and Cervical Cancer Legislation

Throughout the ABCCC partnership, responsibilities were shared among members, and the unique strengths and contributions at the grassroots level and public and private sectors were valued as coalition members designed and implemented multifaceted interventions to address breast and cervical cancer disparities.1,2 The 9 principles of CBPR served as the foundation of the ABCCC and governed the decision-making processes and subsequent policy initiatives. The defining element of the 9 principles is their commitment to improve the health and well-being through action. This participatory action can lead to group empowerment and ultimately social change that impacts various health-related systems, programs, or policies.3 Among the many means of addressing social change are direct action, advocacy, grassroots organizing, and political activism. Yet, little attention has been focused on the effects of CBPR on the policy level.4-6

 

This article documents how CBPR principles were used to influence tobacco and breast cancer policies. Case study methods were used to demonstrate how a select group of community health advisors (CHAs),7 community-based organizations, businesses, churches, health care facilities, and academic institutions from Tuscaloosa, Alabama, capitalized on their ABCCC training and formed an independent, self-governing coalition called the Smoking Cessation Coalition (SCC). This case study chronicles how steps in the Direct Action Organizing (DAO) models were the strategy used to guide and mobilize the SCC to engage in policy change initiatives.

 

Coalition members and CHAs used the knowledge and skills acquired through ABCCC training on grant writing to independently apply for extramural grant funding through the Robert Wood Johnson Foundation (RWJF). With funding from RWJF and other local sources, the SCC developed and implemented their own health interventions designed to reduce cancer disparities among African Americans. The SCC's goals were to use advocacy, communications, and community outreach to save lives by reducing exposure to secondhand smoke. This article describes the action steps led by the SCC to effect tobacco-related policies. The success of these campaigns had a synergistic effect on other campaigns; that is, the cooperative interaction among this coalition created an enhanced combined effect. Once the smoking campaign was implemented, this led to additional advocacy work on breast and cervical cancer policy initiatives.

 

BACKGROUND

Using CBPR principles, the mission of the SCC was to initiate and alter tobacco-related policies that affected the population's health at the local and state levels. The SCC used capacity building and grassroots organizing strategies learned under ABCCC to establish its own priorities. The coalition extended its efforts to reduce the unequal burden of cancer among African Americans by focusing on the hazards of cigarette smoking and the dangers of secondhand smoke. Using CBPR principles and select grassroots organizing action constructs from the Midwest Academy's DAO model,8 for 1 year the SCC engaged its community around the tobacco challenges of the 21st century. The DAO model is based on the power of the people to take collective action on their own behalf. The 3 fundamental principles of DAO are (1) win concrete improvements in people's lives; (2) make people aware of their own power (by winning victories); and (3) alter the relations of power between people, the government, and other institutions by building strong permanent local, state, and national organizations.8 After the SCC gained critical achievements in its strategies to change tobacco laws, the coalition implemented similar action steps to initiate, promote, and change breast cancer legislation.

 

Alabama Breast and Cervical Cancer Coalition, in collaboration with the American Cancer Society, provided training to the CHAs. As described elsewhere,9-12 the ABCCC (1) identified, trained, and sustained a cadre of lay volunteers as CHAs who were skillfully equipped to implement specific ABCCC interventions at the individual and community system levels; (2) provided technical assistance to coalition members and partners; and (3) disseminated evidence-based and promising practices to CHAs, coalition members, partners, and the community at large.

 

For example, under the auspices of the ABCCC, volunteers who were held in high regard in their communities as natural helpers were singled out and recommended by community key leaders to serve as CHAs. All CHAs completed and graduated from a comprehensive 6-week training program where they learned about the etiology of cancer, risk factors, signs and symptoms, screening and treatment options, research ethical issues, community mobilization, and action planning. Using additional funding from other sources, the newly trained CHAs, with support from the ABCCC, conducted community surveys, facilitated outreach activities, and implemented evidenced-based cancer awareness programs and campaigns.9

 

In selecting coalition members and partners, additional members were identified and invited to join the ABCCC on the basis of the needs of the project. Although coalition members and partners were welcomed to attend the CHA 6-week training program, they all participated in a project orientation session upon joining the ABCCC. Furthermore, partners received technical assistance related to capacity building, evidence-based programs, grant writing, project management, and evaluation.10

 

METHODS

A case study methodology can be used to perform an in-depth investigation of a phenomenon. For case studies, the researcher determines what approaches to use in selecting single or multiple real-life cases to examine and which instruments and data gathering approaches to use.13 A case study method is used in this context to provide a detailed account of how the CBPR principles were instrumental in the initiation and promotion of policy change efforts, particularly with tobacco and breast cancer legislation. The DAO model served as the grassroots strategy and action plan to mobilize priority populations to participate in SCC's tobacco policy initiatives. The advocacy training that the SCC received was grounded in this model.

 

This case study begins with a detailed description of 4 distinct phases that were implemented by the coalition for their policy initiatives around tobacco legislation, as shown in Table 2. Each phase incorporated elements of the CBPR principles (Table 1). The advocacy steps performed and the length of time taken during each phase are described next.

  
Table 2 - Click to enlarge in new windowTable 2. Four Phases, Activities, and Duration of the Smoking Cessation Coalition's Tobacco Policy Initiatives

Phase I (2-month capacity building and training)

The first capacity-building step was to select members of the SCC to participate in a 2-day RWJF policy change orientation to better understand the processes involved in the tobacco policy change program. Throughout the RWJF orientation, fact sheets, examples of successful mobilization and policy change efforts, and numbers to call for technical assistance were provided. Following the 2-day training, coalition members participated in a half-day training on DAO.

 

After the development of training materials and educational presentations, other community members were invited to participate in the policy change trainings and activities. The primary recruitment strategies used to disseminate information about the project were flyer distributions and face-to-face meetings with local community groups. Coalition members held an informational meeting 2 weeks before the training began. At the meeting, an overview of the project was provided, along with an explanation of coalition members' roles, responsibilities, expectations, and limitations. Ample time was devoted for questions and answers.

 

The 2-hour coalition trainings were held in February and March 2007, respectively. Each session was taught by experienced facilitators from American Cancer Society (ACS). The first training was on DAO and ways to conduct a political assessment. The second training focused on strategies and techniques for working with the media. Each training topic was presented in an interactive manner and was accompanied by role playing and return demonstrations. Following the completion of the training, a graduation ceremony was held and the participants received certificates.

 

Phase II (1-month development of action plan)

Following the 2-day training and interactive skill-building sessions, members of the SCC regularly read their manuals and formed practice teams to rehearse ways to respond to the media and to practice how to conduct political assessments. As a result of these strategies, members of the SCC were prepared to respond to and/or challenge any measures designed to weaken Tuscaloosa's current smoking ordinance. The current ordinance does not permit smoking in restaurants with liquor licenses and/or special retail licenses until 10.

 

To gain public support on the coalition's smoking initiatives, results from national and local opinion polls were used to assess the public's attitudes and beliefs about smoking bans and secondhand smoke. The 2007 Gallup, a national poll, found that 54% of Americans favored a complete smoking ban inside restaurants, 34% favored a ban in all hotel rooms, and 29% favored a ban inside bars.14 An independent local opinion poll, conducted by Little Rock-based opinion research associates,15 measured what registered voters in Tuscaloosa thought about secondhand smoke and the possibility of strengthening the city's smoke-free ordinance. Four hundred (N = 400) registered voters in Tuscaloosa were randomly selected from throughout the city to participate. Results revealed that (1) 62% of those surveyed responded in favor of strengthening Tuscaloosa's smoke-free law, (2) 96% of respondents viewed secondhand smoke as some kind of health hazard (serious, 65%; moderate, 23%; minor, 8%), (3) 95% of Tuscaloosa voters strongly agreed that no one should be exposed to secondhand smoke in the workplace, and (4) 85% of survey participants thought that it was the government's responsibility to promote and protect public health.

 

On the basis of national and local polls, the members of the SCC proactively held a series of meetings to discuss ways to engage and educate elected officials about the benefits of a stronger ordinance designed to make all workplaces, bars, and restaurants in Tuscaloosa smoke free. To prepare for this task, the SCC (1) reviewed model ordinances from various cities and states that passed a clean indoor air ordinance; (2) created talking points and scripts that stressed the benefits of a smoke-free policy, included recommendations for ways to implement and enforce smoke-free laws, and incorporated proven methods that would refute legal challenges; and (3) continued to garner community support and participation.

 

Phase III (8-month implementation of action plan)

During the continuing monthly educational trainings, coalition members began to implement their previously developed action using the following 6 DAO steps: (1) identify the problem, (2) turn the problem into an issue or solution, (3) develop strategies or an overall plan, (4) involve large numbers of constituents in meetings with decision makers, (5) expect the target to react, and (6) win or regroup.8Figure 1 illustrates a schematic of the 6 concepts in the DAO model. The model served as a framework to advance the coalitions' policy initiatives. The details pertaining to each step are listed in the "Results" section.

  
Figure 1 - Click to enlarge in new windowFigure 1. Schematic of Constructs in the Direct Action Organizing Model.

Phase IV (1-month project closeout and sustainability)

During this step, SCC monthly meetings were held to prepare progress reports, discuss programmatic outcomes, and if needed, reinstate advocacy efforts to combat challenges and opposition. The SCC also forecasted other health and/or social issues that warranted community attention and mobilization activities. Furthermore, this phase provided an opportunity for the SCC to disseminate their successes and lessons learned throughout this endeavor with other community leaders and interested stakeholders.

 

RESULTS

Policy efforts to impact lung cancer disparities

Phase I (capacity building and training)

Three members of the SCC attended the RWJF orientation and received in-depth training on strategic communications, community mobilization and advocacy, and policy initiatives. The RWJF training materials and handouts were shared with members of the SCC for their input regarding ways to modify these existing materials so that they would be both user-friendly and culturally relevant to train community members to participate in policy change activities. On the basis of their feedback, the coalition recommended that the community training curriculum and supporting documents (1) highlight the causal or contributory pathway between smoking and the development of breast, cervical, and lung cancer; (2) include statistics about African Americans and smoking rates; (3) discuss the importance of breathing clean indoor air; (4) share successes and lessons learned from other states that passed a comprehensive smoke-free ordinance; and (5) include sample talking points and educational strategies that can be used by the local community to educate individuals, families and social networks, community systems, businesses, and decision makers.

 

The final community training curriculum and manual was developed along with an outline of monthly continuing education sessions and a volunteer incentive plan. The curriculum and manual included chapters on (1) project overview; (2) cancer statistics for African Americans; (3) hazards of smoking and breathing secondhand smoke; (4) coalition members' roles and responsibilities; and (5) handouts on DAO, political assessments, media and messaging, and action plan development.

 

As a means of introducing the policy change project to the Tuscaloosa community, a press release was developed by the RWJF and distributed to the local news media. Following the press release, coalition members shared a brief synopsis of the project at local churches, civic organizations, academic institutions, health care facilities, and other community forums. Interested participants were asked to attend an upcoming informational meeting to learn how they could participate in tobacco policy change efforts. Primarily on the basis of informal word-of-mouth efforts, 30 individuals attended the informational meeting and 23 African Americans attended two 2-hour training sessions and 10 monthly meetings. After the completion of the training, a graduation ceremony was held and participants received a stipend and a signed certificate.

 

Phase II (1-month development of action plan)

As previously mentioned, the SCC was prepared to respond to and/or challenge any measures designed to weaken Tuscaloosa's current smoking ordinance. Therefore, when measures were introduced to "amend" Tuscaloosa's smoking ordinance to allow restaurants with alcohol licenses to designate a portion of the bar area as unrestricted smoking area if it had a ventilation system; or make all bars and restaurants smoke free up until 10 PM, the coalition began to implement their targeted action plan. The aim of the action plan was to save lives by reducing tobacco use and exposure to secondhand smoke by using advocacy, tailored communications, and outreach to partners. The coalition's long-term goal was to pass a comprehensive, model, smoke-free ordinance that prohibited smoking in workplaces, bars, restaurants, and other public venues.

 

Phase III (8-month implementation of action plan)

The DAO model was implemented as follows:

 

Step 1: Identify the problem

Secondhand smoke is responsible for causing more than 46,000 deaths each year from heart disease and 3,000 more deaths from lung cancer among non-smokers.16 The U.S. Surgeon General reviewed evidence on the health hazards of secondhand smoke and concluded that there is no risk-free level of exposure to secondhand smoke.17 Even brief exposure can cause immediate harm.18 According to the U.S. Surgeon General, the only way to protect people from involuntary exposure to secondhand smoke is to eliminate it entirely.17 For instance, living with a smoker increases the risk of lung cancer by 20 to 30%.17 Further scientific evidence suggests that the risk for lung cancer is elevated by 20% for people who are highly exposed to environmental tobacco smoke in the workplace.19 This latter finding is a public health concern especially since in the United States, only 62.2% of workplaces have smoke free laws.20

 

Step 2: Turn the problem into an issue (solution)

After reviewing the data on the hazards of secondhand smoke, the coalition conducted a political assessment of the current city council and identified opponents, champions, and a sponsor for a model ordinance. Relying on established relationships with the ACS health policy analyst and other government relations personnel, members of the coalition were kept abreast of the status of the clean indoor ordinance, tobacco-related policies, and other relevant political action alerts. Coalition members also started to build relationships with council members, the mayor's office, city attorney, and solidify relationships with collaborators. During this period, the coalition met frequently to determine resources and task assignments. A DAO chart was developed, reassessed, and modified as needed to reflect changing information collected. Furthermore, other community supporters of a smoke-free ordinance were identified and trained by members of the SCC to educate opponents, decision makers, and the media using factual talking points and evidenced-based data in support of a smoke-free ordinance.

 

Step 3: Develop strategies or an overall plan

Utilizing the various services of the ACS Cancer Action Network21 (eg, media advocacy, marketing, and communication), the coalition began to develop and implement public service announcements on the dangers of secondhand smoke and host local town hall meetings with employees of local bars and restaurants about the burden of tobacco among minorities and medically underserved populations. In an effort to counter potential opposition from bar and restaurant owners, media stories were released indicating that smoke-free laws did not negatively impact local businesses.

 

The coalition members also identified minority business leaders who would publicly support a smoke-free ordinance. In an effort to educate elected officials, coalition members provided each city council member with a draft model of a smoke-free ordinance to review.

 

Step 4: Involve large number of constituents in meeting with decision makers

In anticipation that an ordinance would be introduced based on the results of the opinion polls, coalition members began a series of targeting tactics to gain public and political support that included, but was not limited to, (1) educating city council opponents, (2) implementing a yard sign campaign in targeted districts, (3) phone banking, and (4) a post card or e-mail campaign that called attention to the issue, which resulted in earned media coverage. Moreover, the coalition participated in interviews, wrote letters to the editor, and conducted community-wide educational campaigns.

 

Step 5: Expect the target to react

Following the highly organized media campaign, a series of public hearings by the city council were conducted. The coalition members and grassroots supporters packed the city council chambers. Key spokespersons, who were trained during phase 2, addressed the key points of opposition and demonstrated a broad-based community support for a smoke-free community. Using polling results, coalition members conducted a series of high-visibility community events/rallies and other staged activities to establish support in targeted council districts using activities to leverage additional earned media. The SCC prepared for a council vote with a continuation of the tactics identified previously and recount votes if necessary to ensure that the targets and supporters remained fully informed and committed.

 

Step 6: Win or regroup

As a direct result of the grassroots advocacy efforts implemented by the coalition members, they were able to educate city council members about the limitations of ventilation systems at reducing the harm caused by smoke in restaurants and bars; therefore, the amendment to add ventilation clause was not placed into the existing ordinance. Second, the mayor stated publicly that he would veto any attempts to weaken the current ordinance. Although the city council was strongly interested in examining the issues related to a smoke-free ordinance, it opted to defer moving forward until it learned the results of statewide smoke-free workplace legislation, Senate Bill 130/House Bill 490 SB 130.21,22

 

Phase IV (1-month) project closeout and sustainability

The Alabama Legislature came closer than ever to passing a smoke-free law in 2008, but Senate-backed legislation failed to get a vote in the House before the legislative session ended. There were other more pressing issues on the legislative agenda that were a priority. Although the local Tuscaloosa city council did not pass a comprehensive smoke-free ordinance as the coalition members had hoped, they remained vigilant, optimistic, and most of all prepared to challenge any amendment that would weaken their current smoking ordinance and were ready to tackle other issues of interest to the health and well-being of their community.

 

Policy efforts to impact breast and cervical cancer disparities

Step 6 of the DAO model calls for action communities to regroup after a policy win. After the tobacco-related efforts subsided, the coalition and partners, along with various other concerned organizations and supporters from across the state of Alabama renewed its attention toward breast and cervical cancer policies when state funding for the CDC-funded Breast and Cervical Cancer Early Detection Program was removed from the Governor's 2008 to 2009 budget plan. The removal of these funds would restrict access to breast and cervical cancer screening among Alabama's most vulnerable communities. The DAO tactics and strategies from the tobacco efforts were utilized by the CHAs for this new breast and cervical cancer policy initiative. The CHAs used the skills obtained from their previous advocacy training and wrote letters to educate legislatures about the impact these budget cuts would have on Alabama's vulnerable populations. As a result of various organizations pooling resources and working as a unified team, the State Legislature restored breast and cervical cancer screening funds.21 The legislature noted that the letters, visits, and phone calls from the community members were instrumental in their decision to restore funding.

 

The heightened momentum resulting from former policy wins was the impetus for the various statewide coalitions deciding to pursue policy changes to expand Alabama's Breast and Cervical Cancer Prevention and Treatment Act of 2000. This act would guarantee Medicaid coverage to any woman diagnosed with breast cancer from an Alabama Breast and Cervical Cancer Early Detection Program (ABCCEDP) network provider.22 Alabama was classified as level-1 funding. Unfortunately, this level of funding excludes women diagnosed from a non-network provider. As a result, low-income women in Alabama with a breast cancer diagnosis were denied coverage to treat their disease if they were not initially screened through ABCCEDP network providers.

 

Given this issue of importance, several statewide partners advocated for the state of Alabama to also adopt level-3 funding under the Alabama Breast and Cervical Prevention and Treatment Act. This level of funding allows eligibility of coverage to any woman screened by a non-ABCCEDP provider. By adopting level-3 funding, more low-income women diagnosed with breast cancer would be eligible for treatment. As an outcome of the statewide mobilization process, the governor signed House Bill 147 expanding the treatment for women diagnosed with breast and/or cervical cancer through Medicaid. The bill became effective on July 1, 2009.22 From July 2009 to the end of January 2010, there has been a 79.2% increase in the number of women referred by the ABCCEDP to Medicaid. These wins for the various organizations involved in this effort are directly attributable to the use of CBPR principles.

 

DISCUSSION

Using CBPR principles, the SCC implemented a systematic plan to address the social, economic, and political factors that would potentially exacerbate cancer disparities among Alabama's most underserved communities. Table 1 summarizes the coalition's application of the CBPR principles to achieve policy change. Table 3 illustrates the types of partners and their subsequent roles during their policy efforts. In accordance with CBPR principles, the mutual respect and balanced power within the collaborative was evident because members of the SCC remained involved throughout the planning and implementation stages of their policy process. Built on the foundation of trust and transparency, the SCC shared their funding streams with their membership and incorporated members' suggestions regarding compensation levels for participants. The coalition embraced the power, knowledge, and expertise of their membership. The community actively participated in the dissemination of key products such as the instruction manuals for policy training. The community developed policy action plans and demonstrated a commitment to policy change trainings. Furthermore, members wrote letters to the editors of local newspapers, attended community awareness rallies, and educated elected officials about the ways to prevent cancer.

  
Table 3 - Click to enlarge in new windowTable 3. Description of Partners of the Coalition and Their Respective Contributions

Although implementing the day-to-day activities involved in policy change, 2 major lessons were learned that might have implications for other coalitions and partners. First and foremost, community members want to play an active role in addressing issues and concerns that impact their health and wellness. However, because of past social injustices, prejudices, and feelings of disenfranchisement from the larger society, some communities of color may not know how to advocate for their particular cause. By applying CBPR principles, members of the SCC were able to discuss important policy-related matters with partners and key leaders. As a group, coalitions can capitalize on one another's strengths, diverse backgrounds, and perspectives and incorporate them into a final policy action plan. In addition, using the DAO model as a grassroots community mobilization effort proved to be successful in achieving policy change. The policy wins that resulted strengthened the coalitions' belief in their ability to effect positive change and promote justice in other areas of interest.

 

Second, coalition members learned the value of participating in ongoing DAO and continuing educational trainings to keep their coalition mobilized and ready to act when necessary. Most importantly, as a grassroots coalition willing to impact policy changes at the local or statewide level, they witnessed firsthand the power of their collective voices. As a result, the coalition agreed to never say that something cannot be accomplished.

 

This article presents evidence that community-based initiatives grounded in participatory principles can be an effective tool for policy change. Over the past decade, the coalition demonstrated how the utility of CBPR principles could be used to sustain change through the promotion of healthy public policies. Although the focus of this article was primarily on steps to change tobacco and breast cancer legislation, the grassroots mobilization movement of the community as a whole was the strategic force that inspired and sustained policy change. The partnership formed with the CHAs was significant in educating political leaders and in empowering other community members to be an active participant in the policy process. The coalition itself culturally tailored and institutionalized the Direct Action Organizing model, which proved to be an effective method to alter cancer policies. The outcomes from the policy initiatives and achievements have broader implications. Specifically, the findings reveal that members of a diverse coalition can play an important role in eliminating cancer disparities among racial and ethnic groups.

 

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advocacy; community mobilization; community-based participatory research; direct action organizing; policy change; REACH 2010; socioecological model