The Deep South Network for Cancer Control

Transcription

1 The Special Populations Networks: Achievements and Lessons Learned Supplement to Cancer 1971 The Deep South Network for Cancer Control Building a Community Infrastructure to Reduce Cancer Health Disparities Nedra Lisovicz, PhD, MPH, CHES 1 Rhoda E. Johnson, PhD 2 John Higginbotham, PhD, MPH 3 Jennifer A. Downey, MA 4 Claudia M. Hardy, MPA 5 Mona N. Fouad, MD, MPH 1 Agnes W. Hinton, DrPH 4 Edward E. Partridge, MD 6 1 Division of Preventive Medicine, The University of Alabama at Birmingham, Birmingham, Alabama. 2 Department of Women s Studies, The University of Alabama, Tuscaloosa, Alabama. 3 Department of Community & Rural Medicine, The University of Alabama, Tuscaloosa, Alabama. 4 Center for Sustainable Health Outreach, The University of Southern Mississippi, Mississippi. 5 Comprehensive Cancer Center, The University of Alabama at Birmingham, Birmingham, Alabama. 6 Department of Obstetrics and Gynecology, The University of Alabama at Birmingham, Birmingham, Alabama. Given the recent advances in cancer treatment, cancer disparity between whites and African-Americans continues as an unacceptable health problem. African- Americans face a considerable disparity with regard to cancer incidence, survival, and mortality when compared with the majority white population. On the basis of prior research findings, the Deep South Network (DSN) chose to address cancer disparities by using the Community Health Advisor (CHA) model, the Empowerment Theory developed by Paulo Freire, and the Community Development Theory to build a community and coalition infrastructure. The CHA model and empowerment theory were used to develop a motivated volunteer, grassroots community infrastructure of Community Health Advisors as Research Partners (CHARPs), while the coalition-building model was used to build partnerships within communities and at a statewide level. With 883 volunteers trained as CHARPs spreading cancer awareness messages, both African-Americans and whites showed an increase in breast and cervical cancer screening utilization in Mississippi and Alabama. In Mississippi, taking into account the increase for the state as a whole, the proportion that might be attributable to the CHARP intervention was 23% of the increase in pap smears and 117% of the increase in mammograms. The DSN has been effective in raising cancer awareness, improving both education and outreach to its target populations, and increasing the use of cancer screening services. The National Cancer Institute has funded the Network for an additional 5 years. The goal of eliminating cancer health disparities will be pursued in the targeted rural and urban counties in Mississippi and Alabama using Community-Based Participatory Research. Cancer 2006;107(8 Suppl): Ó 2006 American Cancer Society. KEYWORDS: community health networks, African-Americans, cancer prevention and control, education, awareness, collaboration, community outreach, rural population, urban population, screening. We thank the Community Health Advisors as Research Partners (CHARPs) for their tireless efforts to reduce cancer health disparities within their communities. Supported by grant U01-CA from the NCI Cooperative Agreement. Address for reprints: Nedra Lisovicz, PhD, MPH, CHES, Division of Preventive Medicine, UAB School of Medicine, Medical Towers, Suite 516, th Avenue South, Birmingham, AL 35294; nlisovicz@dopm.uab.edu Received January 13, 2006; revision received April 4, 2006; accepted May 24, Cancer Health Disparities Among African-Americans Cancer health disparity is a major problem among racial and ethnic minorities in America. African-Americans face a considerable disparity with regard to cancer incidence and mortality. African-American men have a 25% and 43% higher cancer incidence and mortality rate, respectively, for all cancer sites combined, compared with white men. 1,2 African-American women have lower incidence rates than do white females for all cancer sites combined, yet they have a 20% higher mortality rate. 1,2 For many cancer sites, incidence and mortality rates are consistently higher in African-American women than in white women, except for breast cancer (incidence) and lung cancer (mortality). However, the breast cancer mortality ª 2006 American Cancer Society DOI /cncr Published online 28 August 2006 in Wiley InterScience (

2 1972 CANCER Supplement October 15, 2006 / Volume 107 / Number 8 rate is 28% higher among African-American women when compared with their white counterparts. 3 In addition, death rates from cervical cancer among African-American women are more than twice those of whites. 1,2 A poorer probability of survival once cancer is diagnosed contributes to the higher mortality rates among African-American men and women. For most of the common cancers, African-Americans are less likely, than whites, to be diagnosed with localized cancer when the disease may be more easily and successfully treated and more likely to be diagnosed with cancer that has spread regionally or to distant organs. 1 Further, for nearly every cancer site, African-Americans have lower 5-year relative survival rates than do whites at each stage of diagnosis, suggesting the possible influence of disparities in access and receipt of quality health care and differences in comorbid conditions. 1 The extent to which these factors, individually or collectively, contribute to the overall differential survival rate is not clear. However, recent findings suggest that African-Americans and whites have similar disease outcomes when they receive similar cancer treatment and medical care. 4 The Deep South Network for Cancer Control To address the problem of cancer health disparity among racial and ethnic minorities, the National Cancer Institute (NCI) issued a Request for Applications (CA ) in 1999 for proposals to develop Special Population Networks (SPNs) 5 that would focus on reducing the cancer burden among specific racial or ethnic minorities or both. Since African- Americans are the largest minority population in the Deep South, cancer researchers at the University of Alabama at Birmingham Comprehensive Cancer Center (UABCCC) partnered with the Center for Sustainable Health Outreach at The University of Southern Mississippi and were funded to develop The Deep South Network for Cancer Control (the Deep South Network, the Network) to reduce cancer-related health disparities among African-Americans. Establishment of the Deep South Network, 1 of 19 SPNs, occurred at both the academic system and community levels. Discussion of the academic work is beyond the scope of this paper, and detailed information on building the Deep South Network has been reported previously. 6 The major purpose of this paper is to describe the process by which the community efforts took place by describing the: 1) state of the states of Mississippi and Alabama prior to forming the Deep South Network, 2) reasons for utilizing the Community Health Advisor (CHA) model as a central element of the program, 3) population and cancers of interest, 4) methods used to build the community infrastructure, and 5) accomplishments of the Community Health Advisors as Research Partners (CHARPs) and the Deep South Network. MATERIALS AND METHODS State of the States Mississippi Prior to establishing the Deep South Network in Mississippi, there was little or no infrastructure for cancer control within African-American communities, nor were there any significant efforts to address cancer control among underserved populations on a statewide level. The American Cancer Society (ACS) provided cancer awareness education in rural and urban areas and held Relay for Life events across the state, but participation by African-Americans was limited. One hospital in the state had a Witness Project1 7 that provided breast cancer education within African-American churches in a limited 16-county area. The Mississippi State Department of Health provided funding for underserved women to receive breast and cervical cancer early detection services through the Centers for Disease Control and Prevention (CDC) Breast and Cervical Cancer Early Detection Program (BCCEDP). However, because the program was just beginning to expand in Mississippi, the number of providers for the BCCEDP and the number of women who used the services were low. A few clinical trials were taking place in Mississippi, but very little was known about them by providers or the general population. This baseline information was obtained during physician interviews and surveys of women in Mississippi conducted as part of a Susan G. Komen Breast Cancer Foundation-funded project that involved 1 of the Mississippi Deep South Network investigators (Unpublished data from Susan G. Komen Breast Cancer Foundation grant # POP ). Alabama In Alabama, the situation prior to establishing the Network was somewhat different. There was an NCI-designated Comprehensive Cancer Center at The University of Alabama at Birmingham (UABCCC) that included cancer control and population science programs focusing on community research in minority and underserved communities. Examples of communitybased cancer prevention programs conducted by the UABCCC include: The Bessemer Breast Cancer Outreach Project a pilot project to develop a community-based approach to training CHAs about breast and cervical cancer education and screening in an urban, minority, underserved community.

3 Deep South Network for Cancer Control/Lisovicz et al West Alabama Community Health Advisor Program a community-based pilot project funded by the Alabama BCCEDP to train CHAs regarding breast and cervical cancer education and screening in 3 rural, minority, underserved communities. Community Retention Intervention Strategy (CRIS) to Retain Women Enrolled in Research a project utilizing CHAs to enhance retention and compliance of women in (cervical) cancer clinical trials. The Alabama Partnership for Cancer Control in the Underserved (The Alabama Partnership) an existing partnership of organizations concerned about cancer control among African-Americans, including the UABCCC, the ACS, the US Department of Agriculture Cooperative Extension Service, and the Alabama Department of Public Health. 6 The BCCEDP of Alabama was providing services and outreach across most of the state to underserved women and was part of The Alabama Partnership, as was the Alabama Quality Assurance Foundation, and the state quality improvement organization of the Center for Medicare and Medicaid Services. Population of Interest The Network selected rural and urban areas in the 2 target states in which to conduct program activities. Both Mississippi and Alabama have areas densely populated by African-Americans. The Mississippi Delta and the Black Belt of Alabama were chosen as rural demonstration areas for the Deep South Network. Both areas are characterized by a disproportionate lack of access to adequate health and social services and a predominately agricultural economy, with many of the counties having a population that is at least 50% African-American and a per capita income around $13,000. The urban area chosen in Mississippi was Hattiesburg in Forrest County, where The University of Southern Mississippi (USM) is located, and Laurel in adjacent Jones County. According to 2000 Census data, the population of Forrest and Jones counties is about 30% African-American, with a per capita income in the 2 counties of about $15,000. In Alabama, the urban location chosen was Jefferson County, home of UABCCC, where the population is 58% African-American, with a per capita income of $20,892. Targeted Cancers Because of the greater mortality rates from breast and cervical cancer in African-American women, Deep South Network researchers chose to focus initial intervention efforts on these cancers. Additionally, resources to assist underserved women with screening, diagnosis, and treatment of breast and cervical cancer were available in both states through the BCCEDP and the Breast and Cervical Cancer Treatment Act. The treatment act provides Medicaid funding for treatment when breast or cervical cancer is diagnosed through the BCCEDP. Developing the Network The investigators from the 2 states organized committees to lead the development of each aspect of the Deep South Network. Each investigator participated in one or more committees in which they had expertise, such as cancer awareness, data management, evaluation, the minority investigator training program, and CHARP activities. Each committee conducted monthly conference calls to discuss plans and activities. The Principal Investigator also chaired a monthly Deep South Network conference call during which each committee chair reported plans and activities to investigators, project managers, area coordinators, and data managers for both states. This call also included discussion regarding problems and developed solutions to advance the Deep South Network toward its goals. Each committee developed and implemented plans in its specific area. For example, the cancer awareness committee was responsible for training and subsequently assisting CHARPs in promoting awareness about cancer and clinical trials across a broad array of community situations. Several approaches were used to address the complexity of the early detection message and ensure its correct and consistent delivery. Among the approaches were: 1) reviewing existing cancer education materials to select only those with simple, direct messages appropriate for the target population; 2) developing specific training devoted to preparing CHARPs to disseminate early detection information; 3) creating an educational tool to help ensure consistency and accuracy of the message (CHARP Notes) 8 ; 4) developing 6 key cancer messages delivered via a variety of means; and 5) assessing the literacy level of existing materials and creating low-literacy print materials. The National Cancer Institute s Cancer Information Service (CIS) supported all of these efforts. Other committees developed appropriate goals, objectives, and activities for their areas of responsibility. The activities were carried out by staff, CHARPs, and partnering organizations. Building Community Infrastructure To build a community infrastructure to reduce cancer disparity among African-Americans in Mississippi

4 1974 CANCER Supplement October 15, 2006 / Volume 107 / Number 8 and Alabama, Deep South Network investigators chose to use the CHA model, 9 12 the Empowerment Theory developed by Paulo Freire, 13,14 and the Community Development Theory 15 of coalition building. The CHA model, developed and promoted by the Center for Sustainable Health Outreach at USM, was used to develop a volunteer, grassroots community infrastructure of Community Health Advisors as Research Partners (CHARPs) to disseminate cancer awareness information, and conduct community action planning for improved knowledge of community resources and better access to breast and cervical cancer screening and treatment. The coalition-building model was used to build partnerships for cancer control both within communities and on a statewide level. The Empowerment Theory 13,14 calls for transformation of the research relationship from seeing communities as objects of study to viewing them as partners and as subjects of their own experience and research, the CHA model uses a didactic method of problem identification and action development to overcome problems that oppress community members. In the CHA model, small groups of community members come together to discuss the effects of an identified problem and develop problem-solving ideas from which plans emerge that empower group members to take action for change. The original CHA model is nonprescriptive in that community members can choose the health information subjects that are of interest to them and develop health improvement actions appropriate for their community. This empowers community members as they develop ownership of the problems and solutions to bring about community health improvement. The CHA model is also based on the premise that in every community there are people to whom others go for advice, assistance, and action. These community resources are commonly known as natural helpers. 10 The CHA model seeks to identify, recruit, and train volunteer natural helpers to enhance their innate abilities and knowledge of health and nutrition issues. The program also strives to augment helpers problem-solving skills to assist them in developing actions to address community health issues. The CHA model involves building linkages between community members, local service providers, and formal community leaders. 11 Although volunteer natural helpers join programs such as the Deep South Network with innate helping abilities, it is important that program staff not assume that those abilities are enough to aid in producing desired program outcomes. Natural helpers need to participate in continuing skill-building activities to be productive CHAs who provide valid health information to other community members. Training also enhances problem-solving skills used to bring about actions for change. The continuing education of the Deep South Network CHARPs occurred during monthly maintenance meetings and annually at The Deep South Institute for Cancer Control (the Institute). 6 Community Health Advisors as Research Partners Since the objectives of the Deep South Network included recruiting African-Americans to clinical trials and encouraging their partnership in performing cancer research, the Deep South Network volunteers were called Community Health Advisors as Research Partners (CHARPs). The Deep South Network CHARP groups consisted of volunteer community health advisors who had been through 8 weeks of training (2 hours per week) in breast and cervical cancer awareness information, problem-solving action skills, and the importance of clinical trials research. After training, CHARPs attended monthly maintenance meetings during which they received continuing education in cancer awareness message delivery as well as additional education about other types of cancer. A detailed outline of the steps necessary to develop an infrastructure for recruiting and training African-Americans to serve as CHARPs, including curriculum development and staffing, has been discussed elsewhere. 16 Although the original CHA model is nonprescriptive in its health emphasis, the health focus of the Deep South Network was initially to reduce breast and cervical cancer health disparities. Community members volunteered to join the Deep South Network knowing the specific health emphasis. However, they were free to develop cancer awareness activities and message dissemination channels appropriate for their communities, which provided an atmosphere for individual and group empowerment to develop. The continued increase in creative cancer awareness activities within the communities was evidence of this empowerment. For example, some CHARP groups provided cancer awareness by means of hat contests, cancer awareness walks within their community, town hall meetings, fashion shows, and small community workshops where expert speakers were asked to provide education on the importance of cancer awareness and early detection. Many of the cancer awareness activities were also created to raise funds to be used by the CHARP groups to pay for mammograms or other needed services for members of their communities.

5 Deep South Network for Cancer Control/Lisovicz et al Evaluation of CHARP Training and Activities The CHARP training program was evaluated using a pre/posttest and talking circles (TCs). 8 The pre/ posttests each contained 20 questions to assess knowledge about breast and cervical cancers, including their prevention and prevalence among African- Americans. Questions also were asked regarding the purpose and administration of clinical trials. In both Mississippi and Alabama, there was a significant positive difference in pre/posttest scores for many of the test items. TCs were used by investigators to gather feedback from the CHARPs on a variety of issues related to training and cancer awareness activities. Smaller than focus groups, TCs allowed CHARPs to feel comfortable communicating their thoughts about the program. CHARPs related their expectations of the following types of support from their County Coordinators, program managers, and Deep South Network support staff: open lines of communication; grant money/stipends; print materials (e.g., pamphlets); videotapes, posters, and charts; breast models; technical support; and up-to-date information. The Deep South Network met these expectations by providing necessary materials and information that included: community presentations by program managers and investigators, radio and television public service announcements, television and radio talk show appearances, brochures and other printed materials, breast models, and talking points in the form of six key messages about cancer and cancer awareness to assist CHARP cancer awareness activities. A colorful, purse-size, laminated flipchart, CHARP Notes, summarized the CHARPs training content and the 6 key talking points : 1) all women are at risk for breast cancer; 2) finding cancer early saves lives; 3) get a mammogram every year; 4) get a Pap test every year; 5) clinical trials are keys to winning the war against cancer; and 6) cancer...there is hope! Additionally, monthly maintenance meetings with County Coordinators and CHARPs often involved the program managers and sometimes the investigators or co-principal Investigators or both. Up-to-date information about the Deep South Network program and about cancer also was provided at these meetings. Contact logs 8 were used to evaluate CHARP activities. Each log consisted of a small, purse-size pad of 2-part carbonless paper printed with an area for contact information for the person with whom the CHARP was interacting and various check boxes designed to prompt questions by the CHARP about cancer knowledge, early detection practices, and clinical trial participation. The log also included space to indicate if the CHARP referred the person to screening or treatment or encouraged screening, and/or helped make an appointment to a health care provider. These logs were collected monthly by the Deep South Network County Leaders and used as part of the program s evaluation. Coalition Building Building of coalitions to reduce cancer health disparities occurred at both the state and community levels in the Deep South Network. First, in Mississippi, as CHARPs were being trained in the communities, investigators were busy developing a statewide partnership of organizations to support the community work. In Alabama, efforts were made to expand the already existing Alabama Partnership for Cancer Control in the Underserved. 6 By bringing together other community-based organizations interested in the same goal, individual efforts were multiplied and resources shared to enhance the goal of reducing cancer health disparities statewide. Organizations that came together to form the partnership in each state included the Deep South Network; ACS; the Department of Agriculture Cooperative Extension Services; Information and Quality Healthcare and the Alabama Quality Assurance Foundation, the Medicare quality assurance organizations in the states; the BCCEDP; and the State Departments of Public Health. In addition, some nontraditional community organizations became involved in the state partnerships, such as Women First, House of Hope, Vision Ministries, National Black Church Family Council, and SISTAs. 6 The CHARPs developed a second level of coalition building in the targeted communities. As cancer awareness events were planned in their communities, CHARPs developed partnerships with other community groups interested in improving health or providing services that would increase the potential of CHARPs to disseminate their message. These partners included local ACS staff and volunteers, health care providers and health care organizations, African-American sororities and fraternities, ministers and church groups, individuals willing to cater an event at a reduced rate to support the work of the CHARPs, and organizations such as the CIS that provided cancer awareness educational materials on a local level. RESULTS Community Infrastructure Building More than 1000 potential CHARP volunteers were recruited by community leaders and Deep South

6 1976 CANCER Supplement October 15, 2006 / Volume 107 / Number 8 TABLE 1 CHARP Demographics Deep south network training graduates females males African- Americans caucasians other races Alabama black belt Alabama urban Mississippi delta Mississippi urban Total Community Health Advisors as Research Partners, CHARP. Network County Coordinators. Of this number, 883 CHARPs completed the training program. 97% of the graduates were African-American and 94% were female. Three hundred and forty-two CHARPs were from the Mississippi Delta and 113 were from the designated urban area in Mississippi. Three hundred and seven (307) were from the Alabama Black Belt and 121 were from the urban area of Jefferson County. The profiles of the Mississippi and Alabama CHARPs shown in Table 1 were similar. Most had at least a high school diploma or equivalent. A sizable minority had a bachelor s degree or higher. CHARPs rated their health as being good or excellent. The majority (over 90%) reported that they were active in their communities and over 70% had volunteered in their communities. More than 70% reported that people came to them for advice or assistance or both. Church members, neighbors, friends, and family were most frequently cited as receiving advice, and the advice/help requested was generally related to health issues or family problems or both. Some of the women had held some type of elected office (20% in Mississippi and 29% in Alabama). Overall, the CHARPs were church members and approximately 55% were employed. When asked their reasons for becoming CHARPs, over 75% said they decided to participate in the Deep South Network because they wanted to help people in the community, get involved in health issues, and learn more about cancer. Less than 50% said they wanted to learn more about clinical trials and encourage more clinical trial participation. Since the inception of the program, the Deep South Network has retained 64% of trained CHARPs; 53% and 76% have been retained in Mississippi and Alabama, respectively. The majority of CHARP attrition in both states occurred in the rural areas where distance to meetings and poverty were contributing factors. In the MS Delta, a CHARP may have to travel over 60 miles one way in order to participate in the Deep South Network meetings or activities. Any time a CHARP missed a monthly maintenance meeting a the Deep South Network staff person would contact them to find out the reason for the absence and if there was a problem that the staff person could help resolve. Over the life of this 5-year project, several strategies have been used for enhancing CHARPs skills and retaining them as active program participants. As noted previously, monthly maintenance meetings were conducted by the County Coordinator. During the meetings, CHARPs accounted for their contacts in the community, prepared for future cancer awareness activities, and received ongoing education and skill building. Additional retention strategies included media exposure for activities or accomplishments, expenses paid to attend conferences, door prizes, refreshments/dinner, special recognition, celebration of birthdays, Christmas and Mother s Day cards, and opportunities for sharing talents with other CHARP members. In Mississippi, approximately 30% of CHARPs attended at least 70% of the monthly meetings over the life of the project. In Alabama, approximately 46% of CHARPs attended at least 70% of the monthly maintenance meetings. Coalition building occurred in both the communities and statewide in Mississippi and Alabama as a result of establishment of the Deep South Network. As part of coalition building in Mississippi, Deep South Network investigators partnered with the Mississippi State Department of Health to write a CDCfunded proposal for a 5-year planning grant to develop a state cancer plan. Also, the Mississippi Partnership for Comprehensive Cancer Control (MP3C) has been established as a coalition of organizations interested in reducing the burden of cancer in the state, with a Deep South Network investigator as the first chair. MP3C holds a yearly cancer conference, originally established by Deep South Network investigators, that brings together health care providers, community members, and researchers in an effort to reduce cancer health disparities in Mississippi. The established state partnership in Alabama has applied

7 Deep South Network for Cancer Control/Lisovicz et al TABLE 2 Average Mammograms per Month MS target counties Mississippi Before Increase (%) Before Increase (%) Total African-American White TABLE 3 Average Pap Smears per Month MS target counties Mississippi Before Increase (%) Before Increase (%) Total African-American White for 501(c)3 status and continues to build the capacity for cancer control in the state. In addition, as a result of efforts of Deep South Network staff and CHARPs in one rural community in the Mississippi Delta, a coalition has been developed to establish the Fannie Lou Hamer Cancer Foundation, which now has received 501(c)3 status. This is a significant reflection of the strong heritage and empowerment of African-American CHARPs in the Delta. Ms. Hamer was a Mississippi civil rights leader from the Delta who fought for voting rights and who died from breast cancer. Training and Outreach Talking circles, used to evaluate CHARP training, revealed that CHARPs thought the training was innovative, relevant, and interesting, and provided useful information. CHARPs felt adequately prepared and empowered to go into the community, deliver talks, organize health fairs, and make a difference. CHARPs understood what was expected of them in their role and how best to accomplish their goal of cancer awareness information dissemination. CHARPs reported overall that the training was an empowering experience and indicated that increased knowledge about cancer and early detection were the greatest strengths of the program. Several CHARPs indicated that prior to the Deep South Network training program they felt powerless to help their friends or family members obtain or understand the most up-todate information concerning cancer. As part of the initial phase of community infrastructure building, the CHARPs promoted cancer awareness by contacting members of their community. Each CHARP turned in contact logs of these interactions and of their participation in the ACS programs Tell-A-Friend (in which friends encourage friends to get a mammogram) and Relay for Life. CHARPs reported whether they had talked to anyone about breast, cervical, prostate or colon cancer, clinical trials, or nutrition. They also reported on referrals to cancer services provided in their area, escorts of individuals to a health provider, distribution of materials, demonstrations of breast self-examination, and scheduling of screening appointments. In Alabama, approximately 26% of the CHARPs turned in contact logs and Tell-A-Friend forms during the monthly maintenance meetings. In 2001, Alabama CHARPs reported 357 referrals for screenings, and by 2004 reported referrals had increased to Reported referral data currently are not available in Mississippi. In 2001, CHARPs in both states combined turned in nearly 4000 contact logs, and by 2004 that number had increased to about 12,500. Providing services without outreach dollars, the Mississippi Breast and Cervical Cancer Early Detection Program was unable to reach many potential clients until CHARPs began to get information about screenings into their communities. As the number of CHARPs increased in Mississippi, so did the number of women taking advantage of BCCEDP services. Tables 2 and 3 present the average number of mammograms and pap smears for targeted Deep South Network MS counties and for the State of Mississippi as a whole. All groups increased their screening utilization from the preintervention time period

8 1978 CANCER Supplement October 15, 2006 / Volume 107 / Number 8 TABLE 4 Outcomes: Cancer Awareness Activities Activity AL MS AL MS AL MS AL MS Total Church events * Health fairs Health presentations Parades Relay for Life (ACS) Other cancer awareness activities Total Grand total *Indicates that Data are not available. (i.e., before 2000) to the intervention time period (i.e., ). As the tables show, however, particularly for mammograms, the increase is higher in the targeted counties than for the state as a whole. Although we cannot say for certain that this increase is entirely due to the efforts of the Deep South Network, the percent increase particularly among the target population (i.e., African-American women) is still substantially greater than the percentage increase for the state as a whole. For example, subtracting the increase for the state as a whole in an attempt to measure attributable proportion indicates that 23% of the increase for pap smears and 117% of the increase for mammograms might be attributable to the efforts of CHARPs. the Deep South Network program progress in Alabama has been published previously. 1 CHARP Accomplishments In 2004, CHARPs were asked to provide information regarding their accomplishments and their evaluation of the Deep South Network program. Many community and personal accomplishments were cited. In regard to the community, CHARPs noted the many cancer awareness activities completed. Table 4 presents the number of cancer awareness activities performed by Mississippi and Alabama CHARPs from 2001 to Over the 4 years, CHARPs organized and participated in 740 activities. They were involved in 176 health fairs and 72 church events, and made 100 health presentations. Importantly, CHARPs noted that the Deep South Network had positively influenced the community and the willingness of people to talk about cancer and cancer prevention. In the opinion of the CHARPs, the Deep South Network has a positive reputation in the community and across the nation, and development of the infrastructure has had many unexpected and positive results. Individually, CHARPs reported that the Deep South Network program has been an empowering force in their lives. Many remarked that they had previously been afraid to speak in public but now have developed into quite effective communicators. The Deep South Network did not bring activism to these communities. The spirit was present; however, the network allowed that spirit to take shape and form. We are continuing to evaluate the impact of the Network as an empowering force for CHARPs both individually and collectively. DISCUSSION Communities in Mississippi and Alabama have a deep tradition of activism. The Deep South Network has partnered with the communities and organizations to make significant strides toward achieving its goal to eliminate cancer disparities between African- Americans and whites in Mississippi and Alabama. By utilizing and supporting the inherent structure for change, the Deep South Network has established a substantial infrastructure based on partnerships with underserved communities through the CHARPs and with national, state, and local partners. The Deep South Network has also demonstrated that the CHA model can be effectively adapted to focus on a specific disease or condition and serve as a framework for reducing health disparities in rural and urban communities. In an effort to continue the CHARPs empowerment process, each CHARP group was given the opportunity to write a mini-grant for Deep South funds in their respective state for the last year of the project. Following the guidelines of a Request for Proposal developed by Deep South Network staff, each CHARP group developed a grant proposal and budget for their allotted funds. Investigators and staff reviewed the proposals and made suggestions for

9 Deep South Network for Cancer Control/Lisovicz et al alterations to improve the grant proposals. The minigrants gave the CHARPs more control over cancer awareness activity planning and funding. Although this process was not without problems, such as inappropriate use of funds and activities with no evaluation component, we believe that it was a learning experience that further empowered the CHARP groups and positioned them for continuation without Deep South Network funds. Evaluation of this process continues, but early feedback from the CHARPs is favorable. As a result of the Deep South Network s activities, cancer control has taken on statewide significance in Mississippi and a community infrastructure has been developed to provide cancer awareness and community linkages to health care providers. In Alabama, enhancement of the already existing partnership has occurred and has been supplemented by a larger community infrastructure for cancer control. Lessons learned include: 1) the need to collect community-level baseline evaluation data; 2) the importance of careful selection, training, and support of county and regional staff; 3) the importance of frequent communication with volunteers, especially regarding the program s evolving scope and activities; and 4) the value of bi-state institutes in building camaraderie among volunteers and staff. Successes and barriers overcome during the program s first 5 years include: 1) training programs that were adapted for DSNCC staff and volunteers, 2) establishment of MP3C, 3) a planning grant secured from CDC for a Comprehensive Cancer Program, 4) increased providers for the BCCEDP as well as knowledge and use of the program among eligible women, and 5) CHARP and DSNCC staff assistance in transporting women to screenings and treatments. Remaining barriers include: 1) inadequate funding for program staff and for CHARP travel and training, 2) lack of a public funding mechanism for colorectal screenings, 3) transportation barriers, 4) public misconceptions and fears about cancer and clinical trials, 5) limited outreach in much of the area outside of DSNCC counties, 6) limited providers for screening and treatment in many areas, and 7) the need for sustainable funding source(s) for outreach and navigation activities. Conclusions The Deep South Network has been effective in raising cancer awareness, improving both education and outreach to its target population, and increasing the use of cancer screening services. The Deep South Network has been funded for an additional 5 years, during which the goal of eliminating cancer health disparities will be pursued using Community-Based Participatory Research 17 in rural and urban African- American communities. REFERENCES 1. Jemal A, Tiwari RC, Murray T, et al. 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