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Preventing Chronic Disease

Working with Community-Based Organizations

Health Departments and community groups jointly identify concerns set priorities and plan for action.

Community-based organizations (CBOs) are natural partners in preventing chronic disease. Local agencies often have a track record of working effectively with under-served, low-income and ethnically diverse communities.

Local health departments have a long history of working with these groups on issues such as AIDS and smoking. Traditionally, departments have taken the lead in identifying public health problems, provided public funds to community organizations, and directed their activities. Community agencies may have had contracts to conduct outreach, education, referral or other activities specified by the health department.

While this approach has succeeded in accomplishing certain goals, the relationship also has limitations. Community groups have generally not had an opportunity to exercise their own judgment about the challenges facing residents and the best way to address them. Competition for funding has hindered cooperation and resulted in tension, mistrust and inequities of power. Funding has often limited programs to a year or two of planning and implementation. Communities were not able to develop the internal capacity to continue providing services on their own.

This chapter proposes a new approach, where health department and community groups jointly identify concerns, set priorities and plan for action. Local agencies can build skills in preventing chronic disease and advocating for their community's interests. The health department gains increased understanding of the community's perceptions of the issues, and can tap more effectively into existing community networks.

As you prepare to contact key community-based organizations, here are some considerations to keep in mind:

Be aware of history.
Health departments with a history of funding local groups can expect some tension over past disparities in power. Expect some skepticism as you now present yourself as an equal partner at the table, and acknowledge inequities of the past. Be prepared to overcome assumptions that the agenda has already been set. Where there is a history of competition for funding, patience and care will be needed to help foster trust.

Recognize that this approach is ambitious.
When you decide to approach chronic disease prevention this broadly, you will find that the issues are complicated, and the concepts may be difficult to grasp. Agencies may be used to working on more narrowly defined programs and may need time to see how their efforts can link to other issues. They may be comfortable with direct service, such as client education, but have little or no experience addressing over-arching influences on health, such as environment and public policy. Limited resources and regular staff turnover can hinder the intense effort required for careful planning. Organizations may feel overwhelmed if current programs are already stretched tight.

Build on current efforts.
How ambitious or extensive the collaborative effort is will vary widely, depending on the current capacity of prospective partners. A local network that is already working on some aspect of chronic disease, for example, may be ready to expand its efforts by working together to develop a new initiative. An established local network that has not tackled the issue at all might want to start by collectively learning more about chronic disease prevention. If there is no formal networking among the CBOs in the community, the first step might be to try bringing together groups interested in the topic. In some cases, the health department may decide to work with one or two agencies individually rather than try to organize a network.

Be flexible in setting priorities. The health department must be willing to respond to community concerns. While the goal is to apply the broadest possible definition to chronic disease, communities and agencies may need to focus first on something specific, such as a single disease or risk factor. You may need to be creative in demonstrating links between specific risk factors and chronic disease in general. The department can also help link organizations to programs of interest that address health issues other than chronic disease.

In Contra Costa County...

When the Chronic Disease Organizing Project (CDPOP) first approached community-based organizations in one community, the groups suspected that the health department had a hidden agenda. They were convinced that the department had a particular problem in mind. Some members even asked that the department just identify a health concern and come back with a request for proposals. Department staff convened several meetings and delivered their message repeatedly before they could convince the community of a genuine interest in defining the issues and solutions together.

Once group member trusted that they were equal partners in defining the issues, they quickly began talking about how to reduce the number of emergency room visits for asthmatic children. The health department gathered information about the impact of asthma in the community and catalogued prevention efforts that were already underway. At the same time, staff facilitated an inventory of each organization's mission, clientele and services, to identify other areas of common interest.

After a series of discussions, the group developed a broad vision. They devised a plan to improve nutrition and physical activity, and to reduce chronic stress among pre-school children and their families. Separately, two of the agencies began working with the health department on a proposal for a community-based asthma prevention program.

Following are the major steps involved in working with community organizations to develop a shared chronic disease prevention agenda.

Step One: Choose an initial focus

The health department may want to start by focusing on a limited geographic area or population. In deciding this, staff will need to weigh a number of criteria: the incidence of chronic disease, the level of community interest, and any efforts already underway that can be used as a foundation. Research the following:

  • Health and risk factor data:
    Compare chronic disease, hospemization and mortality rates across the county. Are rates higher in certain census tracts or zip codes? Do neighborhoods with lower education and income have higher rates? Are certain age or ethnic groups at highest risk? Do certain population groups fall ill at an earlier age or get diagnosed at a later stage? Do certain neighborhoods suffer from a higher concentration of risk factors, such as pollution or poor access to healthy food and physical activity?
  • Community interest:
    Are certain communities voicing concern about chronic diseases or risk factors? Are some agencies or networks already working on chronic disease, or showing an interest?
  • Health department priorities:
    Has the health department already committed to addressing specific diseases or serving particular groups or geographic areas? Do any current programs lend themselves to expansion?

If possible, draw a county map that highlights results of your research. Ideally, the work you do with local community-based organizations will coincide with and reinforce other efforts to mobilize residents in the same communities as described below. (For more on working with residents, see Mobilizing Neighborhoods.)

In Contra Costa County...

When Contra Costa Health Services prepared to launch CDPOP, we examined hospem discharge and demographic data and identified five zip code areas where residents were at greatest risk for chronic disease. The department had already established neighborhood organizing efforts in four of those areas through our Healthy Neighborhoods Project (HNP).

Health department staff and the community advisory board reviewed the research and chose to pilot the project in the city of Pittsburg, in the eastern part of the county. The department had already designated the city for increased prevention efforts, and community organizations there were interested in working together on chronic disease. In addition, two neighborhoods in Pittsburg were already participating in the county's Healthy Neighborhoods Project (HNP). HNP had accomplished resident-identified goals for community improvement and appeared ready to move on to other health issues.

Step Two: Identify potential partners

Build on the research described in Step One to identify potential partners. Ask for candidates from health department staff, health outreach workers and educators in the community, and other local leaders. Make an effort to include faith groups, neighborhood associations, and local, non-profit community groups.

These queries are likely to turn up a handful of prospects repeatedly. Meet with staff from these organizations to introduce them to the project and ask if they are interested in getting involved. Ask for the name of someone in the agency who might take the lead. Ask also for other organizations you should contact. Make a list of contacts, noting their level of interest and any follow-up you need to do.

Assess whether agencies are interested in working together or prefer to work individually with the health department. While this chapter describes steps to work with a network of community groups, the process can be adapted to work with single organizations as well.

Step Three: Build vision and commitment

Develop a common understanding of the issues

Once the health department has identified interested agencies, invite them all to meet. Let participants know who else is expected to attend. Ask them to come prepared to describe their agency's mission, major programs and clientele. State the purpose of the meeting: to help the group reach a mutual understanding of chronic disease prevention, and to explore what each organization might bring to a collaborative effort and how the group might benefit.

Start the meeting by introducing a broad framework for chronic disease prevention and the factors that place communities at risk. Present findings from the interviews you held to help people to see how their own work fits into the bigger picture.

Share the results of your localized research on disease, risks and demographics. Be as specific as possible about data on particular neighborhoods or populations represented at the meeting. Acknowledge any limits of available information that make it difficult to get a complete picture for the community. Present the research succinctly and clearly, so that a lay person can readily understand. If possible, make the data come to life with stories, photographs or other visuals. Allow plenty of time for people to ask questions and contribute their own knowledge and experience.

Give the agencies time to network, particularly if they have not worked together before. Set aside time for the groups to describe their programs, interests, and perceptions of chronic disease in their communities. Document the information on a large wall chart. Afterwards, put the material on paper and distribute it to everyone. This assessment will help catalogue current services and identify possible roles for the various groups.

View/Print

Current Efforts of Collaborative Members (7k PDF, 1p.)
Preparing to Collaborate - Questions for Group Discussion (7k PDF 1p.)
Preparing to Collaborate - An Exercise for Pairs (8k PDF 1p.)

As the meeting proceeds, record recurrent themes. Be on the lookout for common issues, population groups, or strategies. Steer away from issues or activities that seem likely to stir conflict. At the end, evaluate the meeting, gauge interest in continuing, and outline next steps.

In Contra Costa County...

At our first meeting with local CBOs, we showed our video on chronic disease prevention, "Together We Can Make a Change." The video gives an overview of chronic disease, risk factors and county statistics. It uses personal examples to represent groups most affected by chronic disease and presents communities that are mobilizing to reduce risks. The video led to a spirited discussion. Agencies examined trends in their own communities and envisioned how their communities might look different if they all worked together.

Follow up

If the group wants to move forward, plan a series of meetings to talk about how everyone will work together. The following topics will need to be addressed, whether the health department is working with just one community group or as a member of a network:

  • Benefits and drawbacks of collaborating
  • Time and resources that partners can contribute
  • Roles and responsibilities for each participant, including the health department
  • Protocols for communicating and making decisions

The group may want to write a memorandum of understanding for each participating organization that states its roles and responsibilities as well as its relationship to other participants, including the health department.

View/Print

Governing a Collaborative (8k PDF, 1p.)

Create a vision

A shared vision and purpose sets a foundation for the group. Start by reviewing earlier discussions about how chronic disease affects the community and how a collaborative of groups might change the picture. The health department may want to set the discussion in a broader context of public health. This may be a good time to introduce the Spectrum of Prevention model presented in the introduction to this Guide. It describes a range of interventions and strategies that promote health. It may help people keep the big picture in mind as they consider specific collaborative efforts.

To create a vision, ask people to put aside for the moment concerns about budgets, resources and other logistical constraints. Ask them to dream of the best possible results. If you choose to brainstorm, remind people to welcome all voices without criticism. Invite people to imagine: How would we like our community to look in three to five years? How would residents be different? How would our agencies be different?

Then draft a vision and test it with the group. It should inspire all of them. It should reflect their experience and understanding of the community's hopes and dreams. It should also fit with each agency's independent mission and priorities. Perhaps ask the group to consider whether they think collaboration will help them work toward this vision.

Set goals and priorities

Once the group has articulated a vision, the next step is to list goals to fulfill that vision. Your earlier research and discussions should provide a foundation. In discussing possible goals, make sure everyone understands the ideas and terms being used. As participants make proposals, encourage them to tell the story of the problem they seek to address.

As participants consider goals, some questions may arise. For example, does this goal really fit with our vision? Is the goal already being addressed elsewhere in the community? Is a preventive approach likely to help solve the problem? Do the partners have the necessary skills and client base? If more information is needed, the health department may be able to do some research and bring results for the next discussion.

If the goals listed are numerous, the group will have to set priorities and agree on a process for doing so. Some criteria to consider in ranking goals are whether they:

  • Fit with the independent mission of each agency.
  • Match the principles/values of the group; for example, to build community capacity.
  • Serve the agencies' clientele.
  • Use existing expertise.
  • Are likely to have a significant impact on chronic disease.

View/Print

Criteria for Collaborative Projects (8k PDF, 1p.)

In Contra Costa County...

In considering possible joint goals, partners in the collaborative described challenges in their communities, as well as past strategies that had helped solve problems and engage residents. Asthma, nutrition, physical activity and parental stress surfaced as major community health concerns. Participants realized they needed more information about health initiatives already underway,including who was working on them and what interventions were being used. The partners looked at the chart they had made earlier to see how each organization could help respond to these issues. They realized that they were not in a position to address asthma effectively, and that there were already others in the community who were working on this condition. The focus shifted to a broader goal of addressing risk factors for chronic disease among pre-school children and their families. Ultimately, the group decided to work with pre-school families in Pittsburg to improve nutrition and physical activity and to reduce family stress.

Step Four: Create and carry out your action plan

Once goals are in place, the group can move on to develop an action plan that spells out specific objectives, strategies, and a timeline for completion. The plan should also assign responsibility for tasks.

Assess what resources each agency can contribute, including staffing and materials. If agency staff have no experience with a broad approach to chronic disease prevention, they may require some training. If staff already have experience, they may be ready to build on an existing program. Design an action plan that addresses the chief interests of staff, so as to foster their commitment to the project.

In Contra Costa County...

The collaborative leaders decided that their staff needed to know more about a comprehensive approach to chronic disease prevention before they could introduce that approach to clients. The group developed a grant proposal for staff training, relying on expertise within the collaborative.

They planned an initiative to follow the training that would help families identify risk factors for chronic disease. The group would invite interested parents to help design an education program.

Unfortunately, the group had to drop the proposal after the prospective funder changed priorities and two of the collaborating agencies lost their directors. The gap in leadership stalled a search for alternative funding. Nonetheless, the agencies continued to work with the health department to develop a comprehensive asthma program. The group also worked to develop the region's concept for another initiative, the Partnership for the Public's Health. This four-year effort was later funded to help Contra Costa as well as other local health departments and communities around the state learn how to work together more effectively.

Step Five: Evaluate the impact

As described in previous chapters, chronic disease prevention presents a special challenge to evaluators. It may take years before the impact of an effort can be seen through health data, such as incidence of disease or hospemization. So you will need to be creative in identifying more immediate measures of progress. Here are some possible evaluation measures:

  • How many activities did we conduct?
  • How well did we do it?
  • How many people in the community participated and how satisfied were they?
  • Did participants show a shift in attitude, behavior, or skill level? Did they begin to participate more in community activities or health promotion programs?
  • Has the community or organizational environment changed? For instance, do people have more healthy choices available? Have we reduced or eliminated any environmental hazards?
  • Overall, how many positive outcomes can we identify?
  • How have the collaborating agencies changed? For instance, are they more able to work together? Have their skills increased? Have they developed new policies and procedures? Are they making more appropriate referrals?

In sum, evaluate your efforts for both quantity and quality. Look for improvements in the community and in the capacity of the collaborating agencies. Document the challenges you have faced and what you have done to overcome them. Also document your successes. This information could prove useful to your group as you move on to address other community needs, or to another group trying to address similar issues.

[next section: Launching A Media Advocacy Campaign]

Content provided by the The Community Wellness & Prevention Program of Contra Costa Health Services.

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