The following pages present eight examples of successful community engagement collaborations. They are:
· Identifying Community Leaders (Thurston County Public Health and Social Services Department and APEX/PH; Olympia, Washington)
· The Church as a "Natural" Partner in Health Promotion (The Jackson County Health Advisory Council; Jackson County, Florida)
· Community Self-Determination in Breast Cancer Research (National Breast Cancer Coalition; Philadelphia, Pennsylvania)
· A "Good Research Agreement": Preserving Community Culture and Self-Determination (The Mohawk Community of Akwesasne; Hogansburg, New York)
· National Cancer Institute: ASSISTing Change in Community Health (American Cancer Society Affiliates, State Health Departments, and Community-Based Coalitions; Detroit, Michigan)
· The Community Makes it a "Safe Night" for Public Health (City of Milwaukee Health Department and Milwaukee Violence Prevention Coalition; Milwaukee, Wisconsin)
· Community Care Network (The Hospital Research and Educational Trust, American Hospital Association, the Catholic Health Association of the United States, and the Voluntary Hospitals Association; Chicago, Illinois)
· Networks for Community Health (North Carolina Community-Based Public Health Initiative; Chapel Hill, North Carolina)
| Case Example | Principle 1 | Principle 2 | Principle 3 | Principle 4 | Principle 5 | Principle 6 | Principle 7 | Principle 8 | Principle 9 |
|
Identifying Community Leaders (Thurston County Public Health and Social Services Department and APEX/PH) |
_ | _ | _ | _ | _ | ||||
| The Church as a "Natural" Partner in Health Promotion (Jackson County Health Advisory Council) | _ | _ | _ | _ | _ | ||||
| Community Self-Determination in Breast Cancer Research (National Breast Cancer Coalition) | _ | _ | _ | ||||||
| A "Good Research Agreement": Preserving Community Culture and Self-Determination (Mohawk Community) | _ | _ | _ | _ | _ | ||||
| National Cancer Institute: ASSISTing Change in Community Health (ACS Affiliates, State Health Departments, and Community-Based Coalitions) | _ | _ | _ | ||||||
| The Community Makes it a "Safe Night" for Public Health (City of Milwaukee Health Department and Milwaukee Violence Prevention Coalition) | _ | _ | |||||||
| Community Care Network (The Hospital Research and Educational Trust) | _ | _ | _ | _ | _ | ||||
| Networks for Community Health (North Carolina Community-Based Public Health Initiative) | _ | _ | _ | _ | _ | _ |
Thurston County Public Health and Social Services Department and APEX/PH
Olympia, Washington
The Assessment Protocol for Excellence in Public Health (APEX/PH) is a process used by local health departments to examine and improve their ability to meet the health needs of their communities. APEX/PH consists of three stages: an organizational capacity assessment, a community process, and a final "completing the cycle" stage. The following is an example of how one public health agency responded to their APEX/PH-identified deficiencies in community assessment and planning. Their solution was to identify community leaders whose input would enhance the credibility of their community health plans within the community. Consistent with community engagement Principles #1 - #5, this approach recognizes the need to establish relationships within the community and work with existing leadership to support the goals of a public health initiative.
During the initial stage of their APEX/PH project, the Thurston County Public Health and Social Services Department identified a need to strengthen their community health assessment and planning capabilities. This issue was addressed in the second stage of the process with the establishment of a County Community Health Task Force, whose members were selected through a modified "key informant" process. Key informants are individuals who represent important constituencies through their knowledge of or experience with the health issues being addressed. The agency convened a breakfast meeting with community leaders, and asked participants to provide the names of appropriate individuals to participate in the Task Force. In essence, participants were asked: "Whose name would you have to see on a health plan to believe it was valuable?" Task Force members were then selected from among the recurring names that appeared in the responses.
Before convening the Task Force, the agency collected comprehensive community data and published it in a book entitled, Health Status of Thurston County. Results from the data book, as well as the perceptions of the Task Force, were used to identify 15 health issues. The Task Force then used a variety of techniques, including some modified versions of those described in the APEX/PH workbook to set priorities among the 15 issues. However, the Task Force was uncomfortable with selecting the top three or five health issues and decided to pursue all of the issues that had been identified.
The Task Force divided into three subcommittees — clinical, environmental, and social — each of which developed plans to address specific issues within the 15. These subcommittees considered current efforts, additional efforts needed, and how to evaluate results. The clinical subcommittee focused on the problems of dental decay in children, immunization of preschool children, and overnutrition and obesity in school-age children. The environmental subcommittee addressed air quality, water quality, food safety, and preventable injury. The social subcommittee looked at issues of child abuse and domestic violence, and alcohol and drug misuse and dependence.
In May 1995, the Thurston County Community Health Task Force published Strategies for a Healthy Future detailing the health issues and the strategies devised to address each issue. The Task Force members recruited a wide range of organizations to lead the implementation of the strategies. An important outcome of this approach, according to one county official, was that "the community now feels a responsibility to make a difference. They’re investing time and energy into moving toward implementation. It’s not a health department work plan. It’s a community health plan — owned and planned by the community — in which the health department participates."
Source:
Centra L, McDonald S. APEX in practice. In: National Association of County and City Health Officials (NACCHO) Newsletter. Washington (DC): National Association of County and City Health Officials; 1997 March.
For general information on APEX/PH, please contact:
Carol Brown, Director, Data and Community Assessment, or
Liz Centra, APEX/PH Project Manager
National Association of County and City Health Officials
440 First Street, NW, Suite 450
Washington, DC 20001
Phone: 202/783-5550
Fax: 202/783-1583
e-mail: Lcentra@naccho.org
The Jackson County Health Advisory Council
Jackson County, Florida
Bringing health promotion activities to members of the community often requires mobilizing the community’s existing assets, both people and institutional resources, as described in Principle #7. Planned Approach to Community Health (PATCH) is a process developed by the Centers for Disease Control and Prevention (CDC) that is specifically geared toward planning and implementing community-based public health strategies. PATCH is founded on the principles of community support and participation in health promotion. Each element of PATCH is characterized by local leadership and decision-making. Instruments can be modified to appropriately reflect cultural diversity, as stressed in Principle #6. Through the use of PATCH, participants are able to learn more about different aspects of the community (Principle #2). In Jackson County, Florida, as in many parts of the country, public health agencies are turning to churches, which can be the most prominent social and cultural institutions in a community. This approach recognizes Principle #3, which asks organizers of community engagement to establish relationships and work with existing leadership structures. With their tradition of community leadership and service, churches are seen as "natural" partners in achieving public health goals. The initiative described below demonstrates how health-related programs have been organized and operated by churches with the support of public health agencies and educators. It also fulfills Principle #5 by demonstrating the value of creating true partnerships by integrating health promotion into the community's established structures.
African Americans in rural Jackson County, Florida, are at greater risk for a variety of health problems than are Whites in the county. This is indicated by higher death rates from heart disease, cancer and stroke, as well as a greater number of low birthweight babies and other health problems. Twenty-five percent of the county’s residents are African Americans. Officials from county health and social service agencies and public health educators saw this disparity in health status as evidence that a targeted health promotion effort was needed. They joined with church leaders, many of whom had a track record of success in mobilizing the community, to formulate an initiative based on a culturally appropriate version of PATCH.
In Jackson County, the church was an obvious place to start for community health promotion. In addition to their significant presence (more than 80 Protestant churches) in the county, churches are influential social and cultural institutions within the African American community. The church is also seen as a community resource because of its role as a meeting place and focal point in many rural regions and because of its traditional role in serving the interests of the community.
One of the initial steps taken by Jackson County was to establish a Health Advisory Council, composed of 16 primarily African American Jackson County churches plus representatives of relevant agencies. Most of the participating church leaders were also leaders in numerous local community organizations. After undergoing a period of training and planning, the Council acquired the skills and resources necessary to encourage other local churches to design, implement, and evaluate their own health promotion programs.
Participating churches were selected according to the following criteria: (a) a minimum of 75 active church members; (b) commitment to the program by the church pastor; (c) willingness to establish a church health committee of at least 8 members; and (d) commitment to participate in training, including training in data collection. Each participating church established a health council responsible for planning a health promotion program. These individual programs were based on (a) the health needs of the individual church’s membership and (b) broader health priorities as determined by the Health Advisory Council with technical support from agency staff.
The priorities identified by the Council were based on data from a community survey, the vital statistics for Jackson County, and data on health-related behaviors among Floridians in general. Based on these combined data, the Health Advisory Council determined that cardiovascular disease was a particular problem for non-whites in the county and this problem was related to poor nutritional practices, lack of exercise, smoking, stress, obesity, and lack of medical attention. The Council recommended that these and other behaviors relating to heart problems should be the focus of the church-based efforts.
The Council organized workshops to provide church participants with basic cardiovascular and health information and to help them plan and operate church-based programs. Church leaders encouraged community members to participate in health promotion activities conducted at the churches and other community gathering places. Activities typically included blood pressure monitoring, direct health instruction, exercise programs, and special programs in various aspects of health. A core of church leaders and members fulfilled a variety of functions, from taking blood pressures to serving as peer facilitators. Program planners also emphasized the integration of health promotion activities with existing church events, for example, by scheduling an activity immediately after worship services.
To supplement and reinforce these activities, the Council placed in local libraries a variety of culturally-appropriate educational resources that focused on nutrition, exercise, and mental health. Resources included videotapes, training packets, games, manuals, and newsletters. The Council also disseminated information about health promotion through radio announcements, church bulletins, and monthly newsletters.
According to an assessment of the impact of the church-based program, it appeared that community awareness was raised with regard to health promotion, as indicated by the increases in program participants over the course of several years. Although dramatic effects were not demonstrated, the programs also appeared to produce improved nutritional behaviors of some people (e.g., decreases in consumption of fatty and high-sodium foods, and increases in consumption of healthful foods) and decreases in blood pressure rates among some high-risk individuals.
Sources:
Sutherland M, Barber M, Harris G, Cowart M. Health promotion in southern rural black churches: a program model. Journal of Health Education March 1992;23(2):109-111.
Sutherland M, Barber M, Harris G, Warner V, Cowart M, Menard A. Planning preventive health programming for rural blacks: developmental processes of a model PATCH program. Wellness Perspectives: Research, Theory, and Practice 1989;6(1):57-67.
Turner LW, Sutherland M, Harris GJ, Barber M. Cardiovascular health promotion in North Florida African-American churches. Health Values 1995;19(2):3-9.
For general information on PATCH, please contact:
Centers for Disease Control and Prevention
National Center for Chronic Disease Prevention and Health Promotion
Community Health Promotion and Integrated Programs
Phone: 770/488-5426
Fax: 770/488-5964
National Breast Cancer Coalition
Philadelphia, Pennsylvania
The National Breast Cancer Coalition (NBCC) offers a model of community engagement in which members of the community become their own advocates to mobilize resources on behalf of a public health issue. Here, community is defined by a shared interest or experience, in this case being affected by breast cancer, rather than a particular demographic characteristic. At NBCC’s foundation are a number of community-based support groups, which reflects the desire to establish relationships within the community (Principle #3). The coalition, very much in line with the concept of community self-determination (Principle #4), crafted new roles for women with breast cancer in determining the directions of research in their disease. The coalition also took steps to provide members of their community with the capacity — the skills and knowledge — to participate in and contribute to the public health and policy processes (Principle #7).
The NBCC was formed in May 1991 by 100 community-based breast cancer support groups. Its goal was to overcome the nation’s lack of progress in combating breast cancer, a leading cause of cancer death among women. The Coalition attributed the lack of progress in large part to the approaches taken by clinicians and researchers, specifically their emphasis on treatment rather than on prevention and diagnosis. Reversing this lack of progress became a focal point of the Coalition’s activities.
One central strategy, established during the Coalition’s first meeting, was to promote research on causes, treatments, and potential cures. Although all but a few at the meeting were non-scientists, the Coalition specifically wanted to see increased funding for research, expanded recruitment and training of scientists, and improved coordination among breast cancer research activities.
As its first major initiative, the Coalition launched a signature campaign called "Do the Right Thing," which produced 600,000 letters that the Coalition delivered to President Bush and Congress asking for increased breast cancer research. This and the Coalition’s related efforts contributed to the decision for increased federal funding for breast cancer research. The Coalition wanted to do more than just add money to existing research. It wanted to change the research enterprise to make it more efficient, more effective, and more responsive to the needs of women with breast cancer.
One of the first priorities established by NBCC was to increase consumer involvement in every aspect of breast cancer research. Dr. Kay Dickersin, an assistant professor at the University of Maryland who was diagnosed with breast cancer a decade ago, describes the Coalition’s rationale:
"We are the subjects of the research. Without us, the research could not take place. We are also the people to whom the research is applied once something is learned. So to leave us out of the research process other than to serve in research studies and to be the users of medical care, really makes no sense."
Dickersin believes a potential role exists for consumers in each step of the research process: in the initial decisions about planning and designing a research project, in the review of the study by institutional review boards and peer review groups, and on the ethical and administrative oversight committees for the study.
One of the most difficult barriers to consumer participation in the research design process is the difficulty in communication between scientists and consumers. Researchers are resistant to involving non-scientists in their projects, citing the lay person’s lack of scientific training and a concern that input from consumers will bias the research. On the other side, consumers tend to be intimidated in scientific meetings and unwilling to assert their views.
To address this "disconnect" between research and the community, the NBCC has undertaken an initiative aimed at preparing consumers for participation in research. Called Project Leadership, Education, and Advocacy Development (Project LEAD), this is a 4-day course designed to increase the influence of breast cancer activists in scientific decision-making. The course includes a full day on basic science, which reviews DNA replication, transcription, translation, cell cycle, cell signaling, genetic linkage, and other issues. It also covers epidemiologic methods and statistics. Other activities include training in advocacy skills, including role-playing, to train women with breast cancer to express their point of view in the context of a scientific meeting.
Having consumers involved in research is good for both patients and researchers, observes Dickersin, who adds:
"Patients are telling about what the disease means to them and the outcomes that are important. This has a positive impact on research so that we are not just looking at it in terms of lab outcomes and survival, but other outcomes important to human beings. The strong partnership with the consumer groups has increased the validity and relevance of research as far as I am concerned."
Source:
Dickersin, K. Presentation at: Institute of Medicine, Committee to Identify Strategies to Raise the Profile of Substance Abuse and Alcoholism Research; 1996 March; Washington, DC.
The Mohawk Community of Akwesasne
Hogansburg, NY
Recognition of a community’s cultural norms (Principle #6) and the need for community self-determination (Principle #4) are essential for gaining acceptance of a project initiated by an outside entity. Presented below is an example of how one community has articulated its requirements and created a process to ensure that its culture and interests are addressed in research projects that want to involve its members. It also reflects Principle #3, the building of trust and strong working relationships between community members and researchers. Principle #8 is implicit in the protocol that was created — the researchers must be prepared to revise their approach, as requested by the community. The research protocol reflects a long-term commitment by recognizing that the community’s interests continue beyond the time frame of any one particular project (Principle #9). Although this example involves research, the concepts and process are relevant to virtually any community-based initiative.
In response to an increasing number of environmental and other types of research projects being proposed in their area, members of the Mohawk Nation community of Akwesasne in upstate New York established a protocol for reviewing research proposals. The protocol is a blend of cultural philosophy and pragmatic response to operational issues and concerns. In addition to presenting guidelines for conducting research that draw from the community’s cultural ideals, the protocol outlines numerous requirements to ensure community participation in all stages of research, from planning through dissemination of the results. The protocol also requires researchers to describe the benefits and risks to individuals and the community as a whole, and to address such issues as informed consent, intellectual property rights, and data ownership.
The review of research proposals is overseen by a community-based organization, the Akwesasne Task Force on the Environment, whose mission is to "conserve, protect, and restore the environment, [and] natural and cultural resources" within the Akwesasne territory. The Task Force reviews behavioral, social, and medical research proposals as well as environmental studies. Their approval is required before any research can be conducted in the community.
The review process is characterized by the Task Force as "a guide to improve relations between the community of Akwesasne and scientists/researchers, and to promote collaboration within the framework of mutual trust and cooperation." The ultimate objective is the development of "a good research agreement," which they have defined as something that will "result in shared power, shared resources, and mutual understanding and will ensure that studies proceed in a manner that is both culturally sensitive, relevant, and beneficial to the participants and community of Akwesasne."
The following excerpts from the "Definitions" portion of the protocol illustrate the views of the community on a variety of issues:
· Empowerment: "Empowerment is defined as a sharing of power and the result of a good research agreement developed by both the community and the researcher. Each of the participants feel that their needs are being met and that their credibility is increasing. Partnership and responsibility continue to grow as more and more respect and equity enter the agreement....Empowerment also means that authorship must be shared between the community and the researcher...."
· Equity: "Equity is defined as a sharing of resources. Both the researchers and the community must bring equity to the agreement. Each of the participants in a good research agreement must evaluate this equity in relationship to the research. Finance or money is only one form of equity. Community knowledge, networks, personnel, and political/social power are other forms of equity. Each of these commodities has value and must be shared between the researchers and community if a good agreement is to be formulated. It will be necessary to review equity over the duration of the agreement."
· Respect: "In order to develop a good research agreement, the researchers and the community must generate respect for each other. Respect is generated by understanding each other’s social, political, and cultural structures. The researchers and the community cannot assume they believe in the same things or share the same goals and expectations....Definitions and assumptions must be clarified and questioned by each side. The community and the researchers must listen to each other with clean, clear ears. Consensus and a mediation process will be used to develop the procedures which can be honored by both the researchers and the community."
The protocol identifies a number of specific areas of concern with regard to the collection and dissemination of research data. In addition to requiring that researchers spell out the benefits and risks (including physical, psychological, social, and cultural risks) that might result from the research, the protocol sets forth strong confidentiality requirements and mandates that data be shared with the community before disseminating them more widely. It also requires that members of the community be given priority in employment and training opportunities associated with the project.
Finally, researchers are also required to undergo cultural sensitivity training and establish communication strategies for keeping the community informed about the progress of the research project. The protocol indicates that the community’s interests continue even after the project is concluded, with requirements for community involvement in such things as commercialization of the research findings.
Source:
Akwesasne Task Force on the Environment, Research Advisory Committee. Protocol for review of environmental and scientific research proposals. Hogansburg (NY): Akwesasne Task Force on the Environment, Research Advisory Committee; 1996.
American Cancer Society Affiliates, State Health Departments, and
Community-Based Coalitions
Detroit, MI
Although smoking is an individual behavior, tobacco use is increasingly seen as a broad public health issue because of the significant influence of social and environmental factors in the initiation of smoking and the decision to quit, and because of the effects of second-hand smoke on non-smokers. A national program to reduce smoking, called ASSIST, is focusing primarily on the community as the most appropriate level for implementing smoking control interventions. The program is based on a model which, consistent with Principle #5, stresses the need to establish partnerships with community organizations and to provide resources that allow communities to undertake their own public health strategies. This flexibility in meeting community needs (Principle #8) means that local coalitions can determine their own interventions. A local ASSIST coalition in Detroit recognized the need to be involved over the long term to ensure that positive public health actions occur (Principle #9).
The American Stop Smoking Intervention Study for Cancer Prevention (ASSIST) is a partnership of national, state, and local organizations concerned with reducing the incidence of tobacco-related cancers. The program’s objectives, which are directed toward both smokers and the general public, include policy changes, media advocacy, and prevention activities at the community level. These prevention activities are designed to encourage smokers to quit and to strengthen the norms and values that support non-smoking.
Each ASSIST program uses the same multi-level partnership model. Community-based coalitions that include voluntary health organizations, such as local affiliates of the American Cancer Society and others who have a history of involvement in cancer prevention and networks of volunteers implement smoking control strategies. At this local level, individual community members and grass-roots groups become involved in the process, and are assisted by community-based, state, and national agencies and institutions (see the Detroit ASSIST Coalition description, which follows). Individual ASSIST programs are administered by state health departments, which offer experience in working in partnerships to achieve public health goals and a guaranteed continued presence. At the national level, the National Cancer Institute provides funding, the smoking cessation and prevention technology that has been developed from years of scientific study, and other technical assistance.
The following assumptions underlying the ASSIST program model reflect the partnership aspects of the principles of community engagement:
· When a community affected by change is involved in initiating and promoting the development of that change, there is an increased probability that the change will be successful and permanent. This involvement includes participation by community representatives in defining the problem and in planning and instituting steps to resolve the problem.
· Staff energies should be devoted to building capacity within the coalition and the site rather than to directly carrying out interventions.
· ASSIST resources will augment the existing resources of coalition members and other community organizations to accomplish ASSIST objectives. Rather than supplanting resources, ASSIST will stimulate and enhance existing resources to expand beyond their current smoking control activities. Conversely, ASSIST staff resources will be amplified by contributions of coalition members and other community organizations.
Community-based coalitions are the centerpieces of the ASSIST program because they are seen as the "organizational structures best suited to mobilize larger communities for smoking control." The initial aim of ASSIST has been to increase the capacity of existing community groups and organizations to serve as smoking control agents, and to bring new organizations into the arena. Below is a brief overview of a coalition in Detroit, where the ASSIST program has been building on the state’s previous tobacco control efforts.
The Detroit ASSIST Coalition
The Michigan ASSIST program supports seven local coalitions, including one in the Detroit area. The Detroit coalition, which was established in 1992, describes itself as an "advocacy and information network through which tobacco prevention and reduction [assistance]...can be provided to all sectors of the community." The local organizations involved in the Detroit coalition include voluntary groups, local health departments, academic institutions, religious groups, family groups, women’s groups, minority groups, health professionals, and community service groups and neighborhood organizations.
A primary goal of the Detroit coalition is to ban tobacco advertising on billboards. The coalition is particularly concerned about the use of billboards to appeal to young people and people in low-income communities. This concern has been fueled by a city survey (conducted at the request of another community coalition), which found that more than half of the 41,000 billboards in Detroit advertised alcohol or tobacco products and that billboards are more common in low-income communities.
Members of the coalition are designated as leaders for specific advocacy strategies developed by the coalition. These include updating the results of the billboard survey, garnering support for a ban from the business community and government, and publicizing the issue in the media. The coalition reports that even with their successes, a continuing need exists to engage groups and strengthen their involvement in tobacco control activities. "While the project has been successful in maintaining a small core group who consistently participate in the activities, recruitment and training efforts will be strengthened to bring the objectives to completion as desired."
Sources:
Kent County Health Department. Michigan tobacco reduction coalition newsletter. Grand Rapids (MI): Kent County Health Department; 1996 July/August.
Michigan ASSIST Project. Michigan ASSIST Project: annual action plan. Michigan Department of Public Health; 1996 July 31.
Michigan ASSIST Project. Michigan ASSIST Project: site analysis draft. Michigan Department of Public Health; 1992.
Michigan Department of Public Health, Center for Health Promotion Tobacco-free Michigan 2000: executive summary 1989 Michigan Tobacco Reduction Task Force Report. Lansing (MI): Michigan Department of Public Health, Center for Health Promotion; 1990 January.
Michigan Department of Public Health, Center for Health Promotion Tobacco-free Michigan 2000: a report of the 1989 Michigan Tobacco Reduction Task Force. Lansing (MI): Michigan Department of Public Health, Center for Health Promotion; 1990 January.
City of Milwaukee Health Department and the Milwaukee Violence Prevention Coalition
Milwaukee, WI
In 1993, following a decade of dramatic increases in violence-related deaths and injuries, the City of Milwaukee Health Department and the Milwaukee Violence Prevention Coalition developed a model community-based prevention program to help reduce violence. This program, called SAFE NIGHT, combines education on relevant topics — such as risk factors, conflict resolution, and anger management — with family enrichment activities and community organizing initiatives.
The SAFE NIGHT approach is based on three objectives, all of which reflect the principles of community engagement:
· Enlist community support for forming an effective violence prevention tool.
· Use public health methods to help reinforce community efforts.
· Sustain prolonged violence prevention efforts with the community at large.
The SAFE NIGHT program has attracted strong support from citizen groups, police, hospitals, schools, and businesses. Nearly 50 community-based organizations and neighborhood groups are involved. Communities have taken ownership of the program, hosting violence prevention events weekly at numerous sites. In addition to developing SAFE NIGHT, the health department provides many of the program’s capacity-building resources, including organizer kits, training sessions, and linkages to businesses that donate services.
Using the SAFE NIGHT model, the health department and communities in Milwaukee have become effective partners in controlling the local environment and reducing violence. To cite one example of its effectiveness: SAFE NIGHT has been credited with sharply reducing the number of children admitted to the emergency room with violence-related injuries at the city’s Children’s Hospital. Similar successes are expected as the program spreads throughout the city and state.
Source:
National Association of County and City Health Officials (NACCHO). J. Howard Beard Award winners honored at the National Association of County and City Health Officials, Annual Conference. NACCHO News 1996;July/August:9.
The Hospital Research and Educational Trust
Chicago, IL
As health care delivery increasingly focuses on community outcomes, local public health agencies and community-based organizations have become critical links to hospitals and health care providers, particularly in reaching the underserved and in the areas of prevention and health promotion. A national program is bringing these groups together in partnerships that emphasize the health status of the community overall and accountability to the community. This program reflects Principle #1, which recognizes that community engagement goals can vary, Principle #2, which requires becoming knowledgeable about the community, and Principle #3, which addresses the need to establish relationships with recognized and trusted community groups. Individual communities are able to determine their own program goals and strategies within this national program (Principle #4). The entire program is based on Principle #5, which states that community partnerships are necessary to improve health.
The Community Care Network (CCN), a program operated by the Hospital Research and Educational Trust, has created partnerships among local health care providers and community institutions, including public health and social services agencies as well as other community-based organizations. Other national groups involved in CCN include the American Hospital Association, the Catholic Health Association of the United States, and the Voluntary Hospitals of America, Inc. The program is supported primarily by the W.K. Kellogg Foundation, with additional funding from the Duke Endowment.
CCN, which was established in 1994, supports projects in 25 communities with diverse populations ranging in size from fewer than 15,000 to more than 1 million. The health concerns of these communities often involve issues of access, whether in terms of geographical access, availability, cost, or insurance coverage.
The goal of CCN is to integrate community-based organizations and perspectives into the local health care system. Local public health and social services agencies play a central role in the CCN program because of their position within the community. As one federal health official describes it:
"Local health departments have a significant and rich history in building coalitions to bridge any gaps or deficiencies in services...; they have done so much work with hard-to-reach populations; they have been heavily involved in community health education...; and they have experience in providing technical assistance. All this has given them credibility within their communities."
This credibility is a key element in engaging community support for the kinds of health initiatives supported under the CCN program.
Under CCN, the objective of improved coordination and management of service delivery is tied to a focus on the health status of communities, not just that of patients or health plan enrollees, and to "community accountability." Different CCN projects are implementing these concepts in different ways, and they typically involve a variety of organizations. For example:
· To the CCN program in Broome County, New York, community accountability means establishing "formal, accountable linkages among providers of health and human services, health planners, and educational system to allow for coordinated case finding and service delivery across the continuum." This approach reflects the diverse range of health concerns in the community, which is confronting high rates of AIDS, drug-related violence, heart disease, teenage pregnancy, and health problems relating to poverty. The Broome Community Partners Uniting for Healthy Families includes the local school district, health department, mental health agency, hospitals, and charitable health organizations.
· In Lancaster, Pennsylvania, the CCN program has identified lack of access to primary care as a major health problem for the community. In this context, the program views community accountability in terms of providing services to the entire population, but they are specifically targeting the uninsured and the underinsured. In addition to health care providers and administrators, members of the Lancaster Community Care Network include attorneys and state and local government officials.
· The principal health concerns in Riverside, California, include a high rate of teenage pregnancy and high absenteeism from schools due to illness. Accordingly, to the Jurupa Community Partnership, accountability means community outreach through school-based community cultural events and health fairs and other activities that provide information about services and the CCN project. The original partnership, which included the social services department, the YMCA, a nonprofit youth service organization, and an elementary school, will soon be joined by a county health clinic and general hospital.
· The Rural Health Outreach Program in Arrington, Virginia, is placing lead responsibility for community accountability with a Community Health Council that provides oversight of the program’s activities and will track health outcomes. Institutional members of the program include community health and social services agencies, county health and mental health agencies, a hospital, a university medical center, and a private managed care organization. They will be focusing on the community’s high cardiovascular mortality rates due to chronic diseases such as diabetes and hypertension, and on such barriers to care as cost and geographic isolation.
Although CCN is a relatively new initiative, it is well on its way to improving public health in the communities in which it is currently operating. More broadly, it is providing an important new model for restructuring local health and human services delivery into a coordinated health care network that places greater emphasis on engaging the community.
Sources:
American Hospital Association, Hospital Research and Educational Trust, Catholic Health Association of the U.S., VHA Inc. Special Issue: On structuring public health. CCN Vision 1996;1(3).
Hospital Research and Educational Trust. Background and resources for a community health status focus. Chicago (IL): Hospital Research and Educational Trust; 1996 September.
Hospital Research and Educational Trust. The Community Care Network Demonstration Program: the demonstration and finalist partnerships. Chicago (IL): Community Care Network Demonstration Program; 1996 July.
Sumaya CV. On structuring public health: Sumaya CV, MD, MPH, Administrator, Health Resources and Services Administration. CCN Vision 1996;1(3):2-3.
North Carolina Community-Based Public Health Initiative
Chapel Hill, NC
An initiative sponsored by the W.K. Kellogg Foundation has promoted stronger links among public health educators, local health agencies, and community-based organizations in underserved communities. The goal of the Kellogg program is to change public health education and practice to make them more responsive to community needs. One state’s Kellogg initiative is described here. Its policies and activities reflect several of the principles of community engagement: Principle #3, working with community leaders; Principle #4, community-self-determination; Principle #5, partnerships with the community; Principle #6, respecting community diversity; Principle #7, capacity building; and Principle #9, long-term commitment. Of special interest is their approach to assessing the existing capacity of organizations to address health-related issues.
For the past several years, 12 groups in North Carolina have been working together to address the public health needs of underserved minority populations in several communities. The groups include community-based organizations, local health agencies, and university departments. Known as the North Carolina Consortium, they are funded by a grant from the W.K. Kellogg Foundation’s Community-Based Public Health initiative. The Kellogg program is based on the following assumption:
"Since all health concepts must ultimately have local relevance, there is a need for public health professionals — as well as for political, human services, and community leaders — to understand clearly the social, economic, and cultural conditions which determine health status and the manners by which these affect life style, behavior, and community decision-making."
The North Carolina Consortium is working to improve the health of targeted populations in selected communities. The communities themselves are identifying the specific issues and concerns to be addressed, while agencies and academic participants are providing technical assistance expertise. The consortium’s approach is based on a non-traditional model of achieving social change, in which "implementation is more than a matter of pooling academic, service agency, and community-based resources. It is one of allowing an interorganizational network to set collaborative agendas and make collective decisions." Consistent with this approach, all members of the consortium have agreed to the following guiding principles:
· Participating community-based organizations should provide strong community support.
· The policy-making body of each participating organization should approve any Consortium initiative.
· The Consortium will designate specific communities with which to work.
· All partners are committed to implementing the community-based process and to acquiring needed resources.
· Each partner is willing to make the changes necessary in order for the community-based health initiative to become a reality.
The Consortium’s community-based strategies are being developed and implemented by four county coalitions. Some of the coalitions already existed, while others were formed expressly for this effort. Like the umbrella Consortium, these four coalitions consist of community-based organizations, health organizations, and university participants. In planning the effort, the county coalitions were evaluated for their capacity to serve as the agents of change. Specifically, they were evaluated in terms of their interorganizational networks, as described above. This evaluation was critical to planning the initial objectives and activities of the different coalitions.
Each coalition was classified according to the level of network that existed among its members. Two coalitions were found to be in the formative, or "exchange network," stage. At this level, groups engage in "mutually beneficial exchanges" and other activities through which trust and common understanding are developed. In one of these two coalitions, the health organizations were already strongly linked, but they needed to develop relationships with the housing agency and residents council that were representing the community. The coalition strengthened those relationships by first addressing some health-related housing problems before moving on to more traditional health concerns. In the other coalition, the health initiative is being led by a community-based organization. Their initial focus has been on gaining community support for the initiative, assessing the community’s health-related priorities, and developing the community’s capacity for addressing issues of concern.
The Consortium judged that the third county coalition had progressed from this early stage to the "action network" stage in which organizations have some experience in jointly addressing a common problem but do not have ongoing collaborations. The community-based organizations in the coalition were able to respond collectively to a crisis, but they did not routinely work together. The initial challenge for this coalition was to establish structures and processes that would ensure that a network would be in place and responsive to the community’s needs on an ongoing basis. Among other things, the coalition began to participate in the "Community Voices" program developed by the Cooperative Extension program at North Carolina A&T State University as a tool to develop a community leadership base. The program goal is to develop groups of community leaders who can work together over time, both in identifying important issues and solving problems related to those issues. Particular emphasis is placed on reaching groups of emerging community leaders who traditionally have not been an active part of public decision-making in the communities.
The Consortium determined that the fourth coalition was at the advanced, or "systemic network," stage. At this level, groups collaborate on all tasks rather than having each organization assigned to accomplish a task alone. Decision-making power resides with the network. In this coalition, the participating community-based organization was itself an umbrella for a network of over 40 smaller community groups, and it already had an ongoing relationship with health agencies. It was clear that the coalition had the capacity to maintain a long-term presence and undertake complex projects. Their primary activity has been to establish a resource center that provides services in four main areas: community leadership development, economic development, health promotion, and minority student career development. This center is the home for such projects as a training program for community health advocates and a program in which hospitals and educators work together to improve the educational performances of children with health problems, and to provide access to health services for public school children in the area.
Funding from the Kellogg Foundation expired in September 1996, but the Consortium and coalitions are continuing their efforts while seeking support from other sources.
Sources:
W.K. Kellogg Foundation. Program announcement: Community-based public health. Battle Creek (MI): WK Kellogg Foundation; 1991.
North Carolina Community-Based Public Health Initiative. Overview of activities and projects 1992-1996. Chapel Hill (NC): North Carolina Community-Based Public Health Initiative; 1996 May.
North Carolina Consortium Partners. Proposal to the W.K. Kellogg Foundation: Community-based public health initiative to improve minority health in Wake, Orange, Chatham and Lee Counties in North Carolina. Chapel Hill (NC): North Carolina Consortium Partners; 1992 April.
LINKING ENGAGEMENT PRINCIPLES TO PRACTICE
Before Starting a Community Engagement Effort. . .
Principle #1 emphasizes the need to articulate the purpose and goals of the engagement initiative. Its implementation involves assessing an organization’s capacity for engaging the community and building or leveraging community assets for health improvement. Community engagement, like any other initiative an organization undertakes, needs to be implemented with a plan of action. The people and organizations engaged, the strategy and approach used to gain their involvement, and the resources needed within the organization and the community all depend on the purpose and outcomes desired.
Community engagement may or may not be a new way of doing business. If it is new, it may mean changing the way an organization makes decisions about its programs and allocation of resources. It may also mean developing partnerships, coalitions, and collaborative efforts with new people and organizations. Before action can occur, the organizational leaders need to consider and develop a management strategy. Everyone initiating the effort needs to be operating from the same level of understanding and from a similar framework.
A formal or informal assessment of an organization’s capacity for and approach toward engaging the community involves looking at:
· The values of the organization (e.g., Does it perceive that it is important to involve the community in identifying community health issues and developing programs? Does it recognize that partnering and collaborating with other groups or community-based organizations are important?)
· The intent of the organization (e.g., What is the best way to establish its position and select strategies to begin community action? Are authoritative approaches or cooperative approaches more appropriate?)
· The operations of the organization (e.g., Is it already working with the community around specific programs or issues? How? Are there existing collaborations with other institutions or agencies? Are community leaders or representatives already involved in decision-making related to program planning, implementation, and evaluation?)
· The resources and expertise available to support an engagement effort (e.g., What mechanisms will be in place to ensure that relevant data on community needs will be used? What financial resources will be required? Which staff are most skilled or already have strong ties to the community?)
In Thurston County, Washington, the health department used APEX/PH as a tool to assess their organizational capacity and goals for engagement. In this case example, Principle #1 was clearly implemented through the health department’s identification of the purpose for engaging the community. Their approach also helped leaders of the engagement effort address Principles #2, 3, 4, and 5 with efforts to know the community, establish relationships and trust, allow community control, and develop partnerships for change. The approach used in this case was effective in gaining the community support necessary to strengthen community assessment and planning within the county.
It is also interesting to note the Thurston County Community Health Task Force’s desire not to select priorities. Priority setting is important, but it can be counterproductive for long-term community engagement. If individuals feel that their interests are not part of the priorities of the group, they may leave the collaborative initiative and valuable resources can be lost. The community organizer may then be faced with an even more difficult challenge to regain participation from those segments of the community.
While the Community Care Network (CCN) initiative had an overall goal to integrate community-based organizations and perspectives into the local health care system, the way this goal was carried out in different parts of the country acknowledged different community needs. The goals and strategies in the CCN program in Lancaster, Pennsylvania, differed from the program in Riverside, California, because of different community needs and capacities. Therefore, this initiative adhered to Principle #1 in establishing a clear purpose and goals, but also fulfilled Principle #2 by becoming knowledgeable about the community in its various implementation strategies.
In articulating the purposes or goals of a community engagement effort, it can be valuable to think through a few key issues:
· Know what is of interest and what accomplishments are expected by involving the community. For example, is the goal a broad one, such as engaging the community in assessing the health status, identifying concerns, and developing and implementing action plans, as undertaken by the Jackson County Health Advisory Council? Or is it more narrow, such as engaging the community around specific health objectives (e.g., the National Breast Cancer Coalition’s goal to foster progress in breast cancer research)?
· Have some idea(s) about how the community should be involved (e.g., as advisors or co-decision makers).
· Be clear on the community to be engaged, at least initially. Is it a geographic community, including all of those who live within its boundaries? If so, what is the size of the target area — a housing project, neighborhood, small town, city, or your organization’s entire service area? Is it a specific racial or ethnic group, income-specific population, or age group? Is it a specific set of institutions or groups, such as neighborhood associations, community-based organizations, faith communities, or schools? Or is it a combination?
· Know the extent to which the focus of the community engagement efforts are flexible. As implementors learn more about the community and issues of interest, you may find it more effective or appropriate to focus engagement efforts on other populations or communities. Similarly, you may want to modify your goals based on community input.
As discussed in Part 1, the social science literature and principles suggest that there are several dimensions to the participation that comes with engagement. An organization’s leaders and staff as well as community leaders and members will be more likely to become involved if they understand what it means to become involved and believe their participation will be meaningful.
Principle #2 asks organizations and community leaders to develop an understanding of the community they wish to engage. As this principle is operationalized, Principle #6 — recognition of community diversity — becomes increasingly important. For example, in Jackson County, Florida’s community assessment, the local health department and church leaders recognized the importance of modifying their PATCH instruments to make them more culturally appropriate. In implementing Principle #2, public health agencies helped to develop a Health Advisory Council whose members defined the assessment strategies and collected data to support programmatic decision-making. They examined economic conditions, health status indicators, demographic trends, and community norms and values to determine the needs of the African American community in Jackson County and how best to meet those needs.
Applying Principle #2 includes one or, ideally, more than one of the following:
· Using census data, existing community profiles, and information from local planning groups and community organizations to improve understanding of such matters as the educational, racial/ethnic, age, income, employment, and health status of the population and to determine what is and is not known about the population.
· Becoming knowledgeable about the formal political structures and influences (e.g., city/county/ward/parish responsibilities and leadership, neighborhood governance, and community planning councils).
· Identifying key community organizations and institutions, getting to know the formal and informal leadership structure, and understanding the linkages among groups and the relevant health, human service, education service systems as well as economic development initiatives.
· Developing an understanding of community/population norms and values and how they may influence participation in engagement efforts, the community’s health decision-making process, and their health behaviors.
· Learning about past and current efforts to engage the community around health or related issues, understanding what worked and did not work — and why — as well as how those efforts might influence a community’s readiness or willingness to become involved again. Increasingly, groups and individuals in a community are already involved in coalitions and partnerships around specific issues, such as HIV/AIDS, substance abuse prevention, and community and economic development. It is important to consider how trying to engage or mobilize the community around other issues may affect these pre-existing efforts.
This understanding will help organizers map community assets, develop a picture of how business is done, and identify the individuals and groups whose support is necessary. Kretzmann and McKnight’s Building Communities from the Inside Out can help identify and map community assets and resources (Kretzmann et al., 1993). CDC’s PATCH also contains tools to help develop an inventory of collaborating groups and survey opinions of community leaders and members.
Learning about communities involves talking with people, attending community meetings, reading community newspapers, and obtaining information from current health providers and planners. It involves establishing relationships and building trust. Consider whether to initiate this activity alone or in partnership with other institutions, public agencies, or organizations. In its use of the "key informant" process, the Thurston County case example describes an innovative way to begin a partnership with the community.
For Engagement to Occur, It Is Necessary to . . .
As discussed in Principle #3, establishing relationships, building trust, and working with community leadership are critical to create the processes for community engagement. In the Mohawk community of upstate New York, the community established its own definitions of true community engagement through its development of a research protocol. Any researcher seeking to work with their community must submit their proposals for review by the Akwesasne Task Force on the Environment. Through this sense of mutual collaboration and benefit, the needs of both the researchers and the community can be met.
The local health department in Thurston County, Washington, talked to community leaders to obtain their advice on membership of a Task Force. The National Breast Cancer Coalition started with many local support groups as its foundation. Church leaders were approached in Jackson County, Florida, to involve their congregations. North Carolina’s Community-Based Public Health Initiative relied on four existing county coalitions to develop and implement new strategies. All of these locations found partners that had mutual interest and their collaboration offered mutual benefit.
In practice, work within communities is a continual effort of balancing benefits and sustaining cooperation and accountability among participating groups. All interested individuals, groups, and organizations with like interests must feel they have influence and can join a community collaboration. This is the foundation for trust among community collaborators. If trust is not present, relationships are guarded and commitments are tentative. Therefore, relationships must be built that are inclusive of the entire community. If participation, influence, and benefits are limited among partners with compatible interest, then distrust is likely and potential community assets may be lost. Being inclusive can create some organizing challenges. However, successfully overcoming these challenges will provide a greater return on the investment made by a community leader through greater involvement of community groups and the assets they bring to the process.
Inclusiveness can create a problem for a facilitator of a community engagement effort. The primary problem is managing the decision-making process if there is a need for formal governance of the collaboration. If this is the case, the community should be given an opportunity to shape the governance process and to provide input on decisions to be made by the governing structure. Such an approach allows the community to influence decisions through the governance structure they helped establish. Again, Thurston County, Washington, demonstrates how communities can identify a leadership structure that is trusted.
Further, for engagement efforts to occur, it is important to show how working together will be of benefit to community organizations and those served or represented by the organization. It is also wise to be prepared to offer strategies to the collaborative process that can achieve a small success quickly and reinforce the benefit of participation.
The acceptance of community self-determination, as articulated in Principle #4, is also clearly necessary. For example, issues of equity and empowerment were central to the Mohawk Nation’s Protocol for Review of Environmental and Scientific Research Proposals. Researchers cannot assume that they know what is best for the community. Decision-making must occur on a partnership basis that results in shared power and mutual understanding. The work of the National Breast Cancer Coalition is also based on the same principle of self-determination and consumer rights. One of the Coalition’s major priorities was to increase consumer involvement in every aspect of breast cancer research. Through capacity building and information dissemination, the members of the Coalition have become important voices in decisions about research projects that affect them directly.
The nationwide Community Care Network initiative, which links public and private sector resources in meeting community health needs, is implemented in adherence to Principle #4. Individual communities are able to develop and carry out their own program goals and strategies according to their self-identified health concerns. For example, one part of the country may focus on decreasing teenage pregnancy, while another forms partnerships to address high cardiovascular mortality rates.
For Engagement to Succeed . . .
When it actually comes down to successfully agreeing upon and implementing the desired actions, several principles (#5-9) are particularly important. Principle #5, development of true partnerships, means creating relationships of mutual cooperation, benefits, and responsibility to ensure that results are achieved. For example, the Detroit ASSIST coalition has been able to partner with diverse organizations to reduce tobacco advertising on billboards.
Community diversity and its role in engagement (Principle #6) must also be an integral part of any approach. The North Carolina Consortium reflects this principle with its respect for the diversity of its implementing coalitions. Each of the four coalitions was in a different developmental stage — this diversity was an integral part of defining goals and objectives and determining first action steps. While one coalition worked on developing mutual trust and understanding, another coalition with more experience in working together was able to undertake more complex projects.
Principle #7 — identifying and mobilizing community assets — is important whether in using existing expertise to identify areas for community action or tapping into skills and resources to implement and refine these strategies. The SAFE NIGHT violence prevention program in Milwaukee identified and mobilized the assets of nearly 50 community organizations and neighborhood groups, while also providing them with capacity-building training sessions, materials, and other resources.
As Principle #8 implies, community engagement is a long-term process that requires community leaders to evaluate their roles over time. It is important that one remains flexible enough to meet the changing needs of the community. For example, while the ASSIST initiative includes global objectives to reduce tobacco use, the local partnerships mean that individual community coalitions can determine the most appropriate interventions for their community.
Over time, it may be appropriate for an organization to move away from a position as a lead agency to a position as one of many partners in a broader effort. In addition, organizations may find that they may no longer need to reach out to involve the community because it may be coming to them with requests (or even demands) for certain resources or programs. Organizational leaders should be prepared to respond. Such community action may require a re-examination and revision of community engagement purposes and goals. Or, the organization may find it is time to broaden community participation and engage new communities on new issues while nurturing existing collaborations.
Principle #9 asks the engaging organization for a long-term commitment to the community. For example, the Mohawk Nation’s protocol recognizes that the community’s interests continue beyond the time frame of the particular research project. Researchers must be prepared to address issues after the research has been completed, such as publication and commercial applications of the findings. SAFE NIGHT, Milwaukee’s community-based violence prevention model, is also based on the idea that sustained efforts over time are needed. Despite the end of their Kellogg Foundation grant, the North Carolina Community-Based Public Health Initiative is continuing its coalition process, recognizing the need to sustain important efforts begun with the community.
CONCLUSION
Principles of Community Engagement has attempted to provide readers with insights into important organizing concepts found in the literature and in the experiences of community leaders. From these, we have drawn a set of principles and shown how they have been applied in real-world community engagement efforts.
The contributors to this book hope it will help public health professionals and community leaders to gain greater insight into the science and practice that supports community engagement and mobilization. We know that an understanding of the science will better prepare health professionals and community leaders to practice the art of effective engagement in the diverse situations that communities face when they take action and make decisions to improve health and quality of life.
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For further information on community collaboration, visit the Public Health Practice Program Office Internet site at www.cdc.gov/phppo/ or contact Michael Hatcher at Mail Stop K39, 4770 Buford Highway, N.E., Atlanta, GA., 30341-3724 or email mth1@cdc.gov.