This section provides information to you about reaching out on a community level with your pain management messages and helping to mobilize your local pain community.

Your community outreach efforts can be a limited, one-time event, or a part of a larger community mobilization engagement. The National Fibromyalgia & Chronic Pain Association wants to support you.  Please let us know about your advocacy efforts by sending us an email at This email address is being protected from spambots. You need JavaScript enabled to view it..  Whatever you decide, try not to re-create the wheel or take on too much at a time. As you get started, look around your community to see what other pain advocacy efforts are underway and build upon those. Also, be sure to consider the voices of other stakeholders in your community who have a reason to care about pain management, from health care professionals and caregivers, to the business community and religious leaders.

Getting Started with Community Outreach

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 ideas.

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.

Conduct 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 networking.

Connect 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, Twitter, InspireMe, PatientsLikeMe (examples of popular social networking websites offering free interactive, user-submitted network of friends, personal profiles, business colleagues, blogs and other communication mechanisms); many pain advocacy organizations and condition-specific advocacy groups host their own Facebook pages.
  • Blogging: e.g., WordPress, Tumblr, Blogger (platforms for creating your own blog or you can follow others)
  • 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, Instagram (image and video sharing websites)
  • Video sharing: e.g., YouTube (video sharing website where users can upload, view and share video clips)

Additonally dedicated chat rooms provide support and information to their members. Access to these more private sites requires registration and the creation of an online account. You may want to consider becoming involved with an online community and starting a discussion thread about pain if one doesn’t exist.

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 & Social Media Relations section.


Speaking Engagements through Established Community Organizations

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.

Resources: Community Outreach

The National Fibromyalgia & Chronic Pain Association.  The National Fibromyalgia & Chronic Pain Association unites patients, policy makers, and healthcare, medical and scientific communities to transform lives through visionary support, advocacy, research and education of fibromyalgia and chronic pain illnesses.  Their work is to end chronic pain conditions from derailing lives by promoting early diagnosis, driving scientific research for a cure, and facilitating translational research for the THREE A's of Treatment for fibromyalgia and chronic pain:  Appropriate, Accessible, and Affordable.  More information can be found at:  www.fmcpaware.org

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.

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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Challenge #5

Seek out local chronic pain and/or fibromyalgia support groups in your area. Attend one of their meetings and network with the individuals present.

Check out the other challenges!

 

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