The undertreatment of pain is considered a national SILENT epidemic. The face of pain is hidden from the general public eye. Individuals and families affected by pain are often silent about the problems and barriers they commonly face due to fear of stigma or shame. A key role of pain coalitions is to identify these problems and barriers in order to create action plans that can improve access to pain management. This cannot be done well if those directly affected by pain have no clear voice.

What is Community Mobilization?iSource: http://www.cdc.gov/std/see/Community/CommunityGuid
e.pdf  Accessed May 29, 2012.

Community mobilization engages all sectors of the population in a community-wide effort to address a health, social, or environmental issue. It brings together policy makers and opinion leaders, local, state, and federal governments, professional groups, religious groups, businesses, and individual community members. Community mobilization empowers individuals and groups to take some kind of action to facilitate change.

Part of the process includes mobilizing necessary resources, disseminating information, generating support, and fostering cooperation across public and private sectors in the community. Anyone can initiate a community mobilization effort. All it takes is a person or a group to start the process and bring others into it.

Why Mobilize the Community? It can:

• Infuse new energy into an issue through community buy-in and support.

• Expand the base of community support for an issue or organization.

• Help a community overcome denial of a health issue.

• Promote local ownership and decision-making about a health issue.

• Encourage collaboration between individuals and organizations.

• Limit competition and redundancy of services and outreach efforts.

• Provide a focus for prevention planning and implementation efforts.

• Create public presence and pressure to change laws, polices, and practices — progress that could not be made by just one individual or organization.

• Bring new community volunteers together (because of increased visibility).

• Increase cross-sector collaboration and shared resources.

• Increase access to funding opportunities for organizations and promote long-term, organizational commitment to social and health-related issues.

Coalition Building for Pain Advocates

At one time or another, pain affects most people. Pain can be a component of a disease like cancer, or a life stage, like growing older. Because pain can affect so many people in so many ways, there are a broad number of opportunities to make sure that pain awareness and pain management rights are on the agenda for a wide number of community groups. These may include arthritis, cancer and fibromyalgia support groups, to faith-based health ministries, to local aging resources or departments of health.

These steps for coalition building are adapted from the Community Toolbox for pain advocacy:ii Source: Community Toolbox – Creating and Maintaining a Coalition or Partnership: Outline for Creating and Maintaining a Coalition or Partnership http://ctb.ku.edu/en/dothework/tools_tk_content_pa
ge_71.aspx Accessed May 29, 2012 

• Describe the multiple organizations that have come together in common purpose. For organizers, this may include increased attention to pain issues or inequities in treatment. Define a mutual goal, such as raising awareness or changing pain policy.

• Keeping your broad goals in mind, assemble the coalition’s (group’s) membership.  Who do you think represents an inclusive list of members ready and willing to collaborate to effect positive change for people with pain? Are people with pain represented? Health care providers? Caregivers?

• With the assistance of your newly assembled partners and community members affected by the issue or problem, outline your partnership’s vision and mission.
• Vision – summarize your coalition’s dream for the future.
• Mission – state your collaborative partnership’s mission. It should include: A statement of what it is going to do and why. Use widely inclusive language to avoid limiting potential new members and strategies with which to bring about the vision.

• State the objectives or goals, needed resources and relationships to accomplish your objectives, and key agents of change in the partnership.

• Re-examine the group’s membership in light of your vision, mission, and objectives. Who else needs to be at the table? How can they contribute to the collaborative partnership’s success and help it reach its goals?

• Describe potential barriers to your partnership’s success and how you would overcome them. These may include “turf issues,” personality conflicts, stakeholders who consider their point of view more important than others, lack of capacity, lack of funding resources, leadership issues, etc. Think about how these barriers might be resolved.

• Identify the financial resources that will be needed to support the group’s activities and infrastructure (this section of the website also includes information on grant writing and funding identification). Be sure to designate a lead organization or individual to be responsible and accountable for financial accountability.
  

• Describe how the group will function as an organization and how responsibilities will be shared among partner organizations. How will your coalition cooperate and collaborate to achieve your common objective? Is the purpose of your project and scope of work clearly defined? Who is going to do what?

• Describe the structure the collaborative partnership will use to do its work. Structure will allow your partnership to function more efficiently and effectively. Three elements are necessary to designate, regardless of the organizational structure.
• Some form of governing structure for decision making
• Rules by which the organization will operate
• A planned distribution of work (and timeline)

• Describe how the group will maintain momentum and foster renewal.

• If your coalition is beginning to lose momentum in achieving its goals or member numbers are diminishing, review current barriers to your success.

• If necessary, revisit your plan to identify and recruit new or additional members. Does your effort’s current form of partnering maximize the organization’s effectiveness, based on current resources and divisions of responsibility among collaborating partners?  If not, how might you change to increase your success? Consider the possibility that your efforts have created opposition. Determine who is opposing your efforts, what their tactics are, and how to respond. What tactics are being used by your opponents or detractors? Choose how you will deal with people and organizations whose concerns are at odds with yours.

• When maintaining the coalition at its current level is no longer appropriate or feasible, consider other alternatives.
• Grow
• Spin off another coalition
• Change focus
• Merge with another, like-minded organization
• Cut back
• Simply dissolve the coalition

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The structure of our communities plays a vital role in where we live, work, play, and worship. Communities also influence attitudes and beliefs about and toward people in pain. Advocacy efforts can help to educate your community and begin to change those attitudes for the better. If you’re thinking about hosting a community presentation or event, consider the following tips on getting started.

Tips on Getting Started

• Be an active part of the community! Becoming an active member in your community is the best way to network among leaders and activists to raise awareness of pain management issues.

• Obtain contact information for local and state chapters of pain-related, civic and, if appropriate, faith-based organizations. Similar to a media list discussed in the Media Relations section, this first step will enable you to organize your local resources.

• Know the organization you are targeting. Doing your homework on an organization is crucial before you make initial contact. Visit the group’s website or call for background information and/or an annual report.

• Investigate the internal structure of the organization. In the realm of civic organizations, it really is “who you know.” At some organizations, a planning director is the person who makes final recommendations on programs and grant proposals before passing them along to the CEO. If you want a program approved, this is the person to whom you need to reach out.

• Determine how the group fits into the community. It is important to note that these organizations’ influence differs from community to community; community relations is not “one-size-fits-all.” Depending on the location, a faith-based organization may serve the interests of a rural community, while a Chamber of Commerce or leadership organization may have a broader reach in a suburban area.

• Tailor your outreach to the mission of the group. Think about why the organization’s members will want to hear about specific pain management issues before you approach them. Similar to tailoring your messages to media and government audiences, each organization reaches out to a specific segment of the community that will care about pain management for different reasons. Again, work with local pain organization chapters to create relevant and accurate presentations.

Conducting a Public Listening

A “Public Listening” is a public awareness activity that provides a vehicle for direct public commentary. Those affected by pain can express their experiences, views, and concerns. This is a forum for “meeting and learning” as opposed to a “meeting and telling” plan that is commonly seen with a presentation or town meeting format.

A Public Listening invites the pain public to become part of creating solutions to improve pain care in their “own backyard.” These communities may develop into support groups or advocacy groups. These events are excellent recruitment tools to build state pain coalition membership.

Connecting with your Online Pain Community

Social networking sites like Facebook, Twitter and YouTube have changed the way we connect and communicate globally and locally. Using these diverse, accessible, and inexpensive/free communication tools, you can take your pain advocacy efforts to a new level and audience. Here are a few examples of ways to reach out virtually:

• Social networking: e.g., Facebook, LinkedIn, MySpace (examples of popular social networking websites offering free interactive, user-submitted network of friends, personal profiles, business colleagues, blogs and other communication mechanisms)

• Event planning: e.g., Meetup.com (online social networking portal that facilitates offline group meetings in various localities around the world)

• Information resourcing: Wikipedia (free, multilingual online encyclopedia)

• Photo sharing: e.g., Flickr (an image and video hosting website, web services suite, and online community platform)

• Video sharing: e.g., YouTube (video sharing website where users can upload, view and share video clips)

The creation of these communication methods provides another way to reach others while advocating for the causes about which we are so passionate. When used responsibly and as a well-informed consumer, these tools can powerfully convey any message. Why not yours?

You can find more information about social media (like blogging and reaching out to online reporters) in the “Media Relations” section.

View the the ITFOP Social Media Videos

Speaking Engagements through Established Community Organizations

After you have looked into the background of the organization and organized your thoughts as to why their audience would care about pain management issues, it is time to approach the group.  Here’s a recommended approach:

• Write a letter detailing your proposed idea to the identified contact.

• Call to follow up.

• Set up a meeting. If you know a member of the organization, it can be a good idea to bring that person to the meeting to serve as an internal advocate for you.

• Nonprofit and community organizations are businesses – treat them as such. Treat your contacts at community organizations with professionalism and respect.

Take advantage of the opportunity to speak to groups that can be allies in support of pain awareness. Here are a few tips:

• Let the audience know that you need their help in getting the word out about pain awareness.

• Put a face to the pain story. If you have a personal, family or patient experience with pain management issues, telling the story can help to illustrate some of the issues that people suffering from pain face. (If you’re referring to a patient, though, remember to speak in generalities to protect confidentiality.)

• End your remarks by challenging the group and its individual members to step up and help out.

• Whenever possible, supply fact sheets or handouts so that your audience can act immediately to demonstrate their support while your talk has them motivated.

• Prepare your material ahead of time and rehearse your presentation. Organizations like Toastmasters (www.toastmasters.org) offer great tips and techniques on public speaking.

Publicizing Your Event

Local Media

Talks are also great opportunities to involve the press. Local weekly newspapers are a good target for these events. Review your local newspapers to identify the reporters who cover either your town or health-related topics, and invite them to cover the event.

Your event can also be an occasion to request a calendar listing. Nearly every daily newspaper and many television and radio stations offer online community calendars where you can quickly upload your event details for free.  Submit listings at least a month in advance of your event, when possible.

Informational Flyers

Help publicize your event by drafting informational flyers. Make sure that you have the organizer or host’s permission to distribute these prior to your talk. The most effective flyers are designed to concisely deliver only a few key points and then refer readers to phone numbers or websites for more information. A flyer with too much clutter will not be read. Some excellent distribution sites for flyers include:

• Outpatient rehabilitation centers

• Waiting rooms of physicians and physical therapists sympathetic to your cause

• Nursing home waiting/reception areas

• Counters of pharmacies interested in pain management education

• Health fair booths

• “Coping with Pain” education courses at local hospitals

• Meetings of your group and its civic group allies

• Employers

• Local places of worship

• Newsletters

If you are not able to secure a speaking session within the organization, another way to reach out to a civic community audience is to write an article for their newsletter, focusing on pain management issues in your community.

Online Communities

Use sites such as www.meetup.com to create a group or join a group of people interested in “meeting up” to talk about issues surrounding appropriate and effective pain management or access to care. Contact support group leaders for pain-related conditions such as fibromyalgia, cancer or arthritis to see if you can post event information on their listserve or e-newsletter. Also check out websites for national pain organizations to see if they have ways to list local events.

You can also get the word out about your pain-related event through the In the Face of Pain “News & Events” calendar. Click here to submit an event.

Finding Funding & Grant Requests

If your community outreach efforts expand to a point where you would like to request funding for expenses, keep in mind the following minimum requirements for requests to be taken seriously.

• A proposal request must be stated on an organization’s letterhead.

• A letter of intent needs to be addressed to a specific individual at the company (“Dear Friend” letters are usually not considered), and signed and dated.

• If other than the person sending the letter, the name of the person and title requesting the contribution should be included. Your organization’s mission should be stated.

• Specifics about the program/event (including details such as anticipated audience attendance, date, location, etc.) should be included.

• Also indicate financial amount requested (various levels of support, if and when applicable), federal tax-exempt ID number and a copy of the organization’s 501(c)(3) letter from the IRS.

What is 501(c)(3)?

This is a section of the Internal Revenue Code that designates an organization as charitable and tax exempt. Organizations qualifying under this section include religious, educational, charitable, amateur athletic, scientific or literary groups, organizations testing for public safety, or organizations involved in the prevention of cruelty to children or animals. NOTE: The tax code sets forth a list of sections, 501(c) (4-26), to identify other nonprofit organizations whose function is not solely charitable.

Grant Writing and Application Tips from Community Toolbox

The Community Toolbox vision is of people—locally and globally—taking action together to change conditions that affect their lives. The purpose of the Community Tool Box is to build capacity for this work—to make it easier for people to bring about change and improvement in their communities. The Community Tool Box connects people with resources for learning the many skills required for this work and applying this knowledge in diverse cultures and contexts. Information available from Community Toolbox can easily be applied to local pain-related community outreach, specifically “Generating, Managing and Sustaining Financial Resources (Chapters 42 – 44).” For more information, visit: http://ctb.ku.edu.

Sources of Funding

The Pain Advocacy Community e-newsletter features a regular column called the “Bucks Box” that helps people find funding for research and outreach. You can sign up for the e-newsletter by clicking here.

Community Foundations can also provide support to programs on a local level. A community foundation is a charitable organization that derives its funds from gifts provided by its citizens. Any citizen can contribute any amount of money to a community foundation, which invests the gifts for growth and income. The community foundation then uses that income to make grants that strengthen the community. Community foundations operate under the principal of perpetuity, meaning that gifts made to the foundation will continue to grow and earn resources for the community forever.

The Chronicle of Philanthropy is another source for funding information and grant request tips.

Grant Writing Tips

Getting through the door requires that the goals of your initiative be consistent with those of the foundation. Familiarize yourself with the annual reports or websites before you make your request so that you know what the foundation funds. Specific tips include:

• Start your request with what your organization expects to achieve and how that relates to the foundation’s interests.

• Indicate briefly what your organization will do with the funding and how it will measure the successful achievement of its stated objectives.

• Keep the application brief and to the point.

• Often, foundations will not provide for interviews with applicants, so the written application and proposal are the keys.

• Many groups will not provide financial support for “core” expenses. Instead, they fund projects that can serve as models for others. Describe your activities as a specific approach to a problem that may be replicated by similarly situated organizations.

• Finding collaborators in your organization’s efforts is often a plus. Funding sources may be more inclined to support an effort by multiple groups to provide coordinated assistance to a population with a particular disease, or to provide the same kind of assistance to people with various types of chronic illness.

• Partner with an established nonprofit organization to create a proposal prior to approaching your local community foundation or other funding source. Many only distribute grant funds to established 501(c)(3) organizations.

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Local Support Groups

Support groups may also be a good place to find out what activities are currently being conducted in your area and specific education needs of the community. The American Chronic Pain Association coordinates a network of support groups that welcome anyone who is living with an ongoing pain problem. Click here for more information about locating a support group near you, or call (800) 533-3231. If there’s not a support group in your area, the ACPA can also help you start one. You can also look online through websites like www.meetup.com to find local gatherings or groups of people who are affected by pain, or you can join an online support community through Facebook.

The Community Tool Box

The Community Tool Box is the world’s largest resource for free information on essential skills for building healthy communities. It offers over 7,000 pages of practical guidance in creating change and improvement. The information included in this resource is not related to pain specifically, but many of the ideas can be modified for pain management advocacy. The Toolkits should help you get a quick start in doing key activities in community work. You may already be implementing some of the strategies and tactics discussed in these tools, but you can also explore for new ideas and time-tested strategies surrounding coalition building, identifying problems and goal-setting, leadership, evaluation, and sustaining your efforts just to name a few. For more information, visit: http://ctb.ku.edu/en.

Centers for Disease Control: The Community Guide to Preventive Services

From a public health standpoint, the CDC’s Community Guide offers the highest level of information on community intervention, as the findings are based on science-based systematic reviews of all available literature on evidence of effectiveness and economic efficiency. The interventions reviewed include the complete range of prevention strategies, including health care system changes, provider and client strategies, policies, laws, worksite interventions, and community-based methods such as mass media campaigns. While not pain-specific, many of the health topics can be reviewed for outreach ideas. Topics addressed encompass disease prevention (e.g., vaccine-preventable diseases), behavior change (e.g., tobacco use prevention) and environmental changes (e.g., designing communities to encourage physical activity). Community Guide findings complement existing decision support tools such as health data, performance objectives (e.g., Healthy People or Health Plan Employer Data and Information Set/HEDIS), and model programs. Lastly, the Community Guide conducts systematic reviews to identify gaps in evidence on effectiveness, indicating where additional research is needed.

United Health Foundation – America’s Health Rankings

America’s Health Rankings combine individual measures of several health determinants with health outcomes into one, comprehensive view of the health of a state. It also discusses health determinants separately from health outcomes. The ultimate purpose of America’s Health Rankings is to stimulate action by individuals, communities, public health professionals, health industry employees and public administration and health officials to improve the health of the population of the United States. This information can be used to take action in communities regardless of whether their state is first or 50th. While not directly related to pain, many of the determinants, such as overall health, insurance or employment status, can be connected to pain and painful conditions.

U.S. Pain Foundation

U.S. Pain Foundation offers community outreach through programs such as the Invisible Project. More information can be found at: www.invisibleproject.org.

P.A.N.D.O.R.A., Inc.

Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy (P.A.N.D.O.R.A.). offers empowerment groups and awareness events throughout the community such as the Advocates Extraordinaire Program.

Public Speaking and Presentations

If you’re concerned about giving a community presentation or speaking in front of a group of stakeholders, visit the website for Toastmasters International, an organization that helps people develop public speaking and presentation skills.

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Checklist: Community Outreach

Plan:

• Look into local support groups or contacts of national organizations or through hospitals or health centers; if none exist in your area, consider starting one of your own!
• Think about what you would like to accomplish on a local or state level.
• Collect the contact information for stakeholders in your community who you think might have an interest in improving pain care.
• Plan your community awareness event.
• Check in with stakeholders and local contacts for national consumer and professional organizations to see how they can support your efforts.

Do:

• Reach out to stakeholders and raise awareness of pain issues among this group.
• Determine funding needs, as necessary, and secure.
• Reach out to local media and your online community to publicize your event.

Check:

• Are your efforts still on track?
• Have you encountered people in the community with opposing views? How do you plan to address their concerns?
• Are your community logistics in good shape?

Act:

• Conduct your awareness event, public listening or other local activity.
• Follow up with local chapters, support groups or other organizations to report back about your activities.

Download the “Community Outreach” Checklist

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