POWER OVER PAIN PROJECT

Massachusetts was chosen in 2003 to be one of three states to pilot the Power over Pain project, thanks to a grant from the American Pain Foundation and the Alliance of State Pain Initiatives. To date, over 50 POP presentations have been scheduled around the state and nearly 700 people have participated. Following is information about how to volunteer and the Executive summary which shows a detailed outline of this exciting national project!

The Massachusetts Pain Initiative (MassPI) seeks to mobilize organizations and individuals with the purpose of publicizing the pain epidemic and educating the public and healthcare professionals. Because Power Over Pain (POP) is community based, volunteers are essential to its mission. POP will teach people about pain, treatment and advocacy. Pain sufferers attending a program will leave with practical information that improves their ability to receive effective pain management services. Healthcare professionals attending a POP will leave with practical information that improves their ability to understand, assess and treat pain. Continuing education credit is currently offered to nurses who attend a POP program.

Power Over Pain materials, trained mentors, and MassPI staff will enable you to:

  • Present the POP presentation to any size group. One of POP's experienced volunteers will train you on the existing materials. We are looking for clinicians with some pain background to be presenters.
  • Lead your geographic area, as a POP Area Coordinator. Responsibilities include recruiting additional volunteers and helping them identify interested groups and plan POP presentations in your community.
  • Coordinate logistics, date, time, who will present, advertising, for POP programs.
  • Attract media attention in TV, radio, newspapers, newsletters to cover POP activity. Kickoff events in your community, compelling human-interest story, or many other ideas often draw the media.
  • Speak out about these important issues by becoming a patient or professional advocate and being trained as a spokesperson.

The Massachusetts Pain Initiative (MassPI) is leading this project while collaborating with the American Cancer Society, the American Pain Foundation, the American Society of Pain Management Nurses, and the Alliance of State Pain Initiatives to deliver Power Over Pain in Massachusetts.

If you are interested in being a volunteer to help spread the word about pain in your community, please contact info@masspaininitiative.org.

More Information for Potential Volunteers:
MassPI Volunteers have developed a Volunteer Packet that will help each new volunteer understand more about Power Over Pain and become trained to present in their own community.

Inside each Volunteer Packet is:
Power Over Pain and Community Organizations – this is to help guide you in finding groups in your community interested in a POP presentation
Get Power Over Pain! – this is a template form that you can put up all over to advertise the upcoming POP presentation in your community, there are many more of these so don’t be shy in asking for more!
Sample News Release – this is a sample news release that you can use to advertise your POP presentations with local media. MassPI can also provide assistance for you in advertising with your local media (send the press release, call newspapers, etc.) if you let us know the details 3 weeks in advance.
Blurb for “Power Over Pain Seeks Volunteers” – This is a “blurb” that can be used in other printed materials – for example, the newsletter at your local church or hospital.
Massachusetts Power Over Pain Presenter Evaluation Form – THIS IS EXTREMELY IMPORTANT!! This information on this form needs to be submitted to a member of the MassPI representative within a week of your POP presentation. This is how we will track the results of our POP project and report to our grant provider.
Power Over Pain – Presenter’s Check List – this is a great “cheat sheet” to help keep you organized for your POP presentation
Power Over Pain – Travel Reimbursement Form – If you would like to request reimbursement for expenses related to your POP presentation (i.e. mileage, parking, tolls, overheads) please submit to a representative of MassPI.
Addiction, Physical Dependence and Tolerance are NOT the Same – This is an extra handout that you can provide during your POP presentations. This subject is often misunderstood and becomes a barrier to good pain management for many.
Key findings of Massachusetts Pain Survey – This survey was paid for by the POP grant from American Pain Foundation to develop baseline information about pain issues in MA. Its inclusion in this packet is to provide more information to you, as a POP volunteer.

Power Over Pain. Calling Communities to Action
A Pilot Project

Executive Summary
Project Summary/Request
The American Pain Foundation (APF), a nonprofit organizations serving people with pain through information, advocacy, and support, and the Alliance of Sate Pain Initiatives (ASPI), a national network of State-based Pain Initiatives, request funding to pilot and develop a model grassroots public awareness project that can be implemented in states and communities throughout the nation. Called Power Over Pain, the project is designed to give organizations, committed to improving pain care, with the tools and expertise they need to form local coalitions, and conduct high-visibility public awareness/media activities in their areas. In the first year, the project will be piloted in Florida, Louisiana, and Massachusetts.

Introduction
The Vision: Americans in communities across the nation will understand that their pain should be treated, and they will have access to effective pain relief.

Overarching Goals:
The purpose of Power Over pain is to:

  • Create an action-oriented, grassroots, public awareness campaign model in which organizations and individuals will work collaboratively to improve pain care in states/communities throughout the nation.
  • Publicize the pain epidemic and position pain management as a major healthcare priority on the state/local level.
  • Arm pain sufferers with practical information and increase their demand for pain management services.
  • Encourage organizations and the public to become involved in state-based pain efforts.

Problem: A Health Epidemic That Needs
to be Addressed on the State/Local Level
Pain is a major health and healthcare problem in the United States. More than 50 million Americans suffer from cancer and non-cancer chronic pain, and each year, another 25 million experience acute pain as a result of injury or surgery. Although the medical knowledge is available to relieve or ease most pain, the tragedy is that most goes untreated, under treated, or improperly treated.

Who suffers from pain? Pain affects people at all stages of life—the young, the middle aged, and the elderly. At the end of life, more than one-third of terminally ill patients die in pain. Why? Because:

  • Healthcare professionals, policymakers, and the general public do not consider pain a critical health issue.
  • Many people with pain are unaware their pain can be relieved or controlled, or that they have the right to effective pain management.
  • Healthcare professionals have not been trained adequately to manage pain effectively.
  • Both pain patients and healthcare providers mistakenly believe that opioid medications—one of the most effective ways to treat serious pain—are addictive. Doctors may be reluctant to prescribe strong pain medication for fear of regulatory scrutiny. Patients may be concerned with side effects from pain medications.
  • Although many organizations working to improve pain management on the state and local levels have the interest and the will to reach out to the public with pain information, few have the experience or the tools they need to:
    • Organize the "community" and form coalitions among groups with a stake in pain issues.
    • The know-how to create and implement public awareness activities that address the pain problem in general, and specific state/and local pain issues.
    • Capture the attention of the press by making pain news.

The Opportunity: The Time Is Right to Take Action!
The pain epidemic needs action on the grassroots level, and the convergence of several developments make this the ideal time to launch Power Over Pain:

  • The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has established pain management standards that require its 19,000 hospitals, nursing homes, and other healthcare facilities throughout the country to assess and treat pain, as well as inform patients about their rights to effective pain care. These standards went into effect on January 1, 2001 and must be fully implemented this year. The JCAHO pain standards provide a window of opportunity for state and local initiatives to focus attention on the problem of pain, encourage healthcare professionals and facilities to provide better pain care, and inform people with pain about their right to have their pain assessed and treated.
  • The media is becoming increasingly interested in pain management issues. Unfortunately, sensationalized and unbalanced media stories about the street use and diversion of opioids have increased over the last two years. This makes it an opportune time to address damaging local news stories, speak out about pain issues, and dispel the myths about using opioids in the management of pain.
  • The 106th Congress passed H.R. 3244, and President Clinton signed into law, that The Decade of Pain Control and Research would begin January 1, 2001. The "decade" provides an opportunity to bring focus to the need for pain research, education, and clinical management. The effort was spearheaded by the Pain Care Coalition, which includes the American Academy of Pain Medicine, the American Pain Society, and the American Headache Society.

The Plan

Selection of Pilot States/ Leveraging
Existing Partnerships
Pain Initiatives in Florida, Louisiana, and Massachusetts will pilot the project in the first year. These states have been selected because of their high interest in conducting a public awareness project, demonstrated leadership, and existing infrastructure. In 2003, both the Florida, Louisiana, and Massachusetts projects will be implemented by State Initiatives, working in collaboration with area divisions of the American Cancer Society (ASC), local chapters of American Society of Pain Management Nurses (ASPMN), and other organizations with a stake in pain issues. In both states, the goal is to conduct activities in cities and towns statewide.

ASPI and American Cancer Society (ACS): The Power Over Pain project complements recent efforts to build a national, divisional/state partnerships of action between the ASPI and ACS—a partnership based on a common goal to improve pain management through utilizing the unique strengths of each organization. In both selected pilot states the recent ASPI/ACS collaboration has increased the capacity for both organizations to become leaders in the state to improve pain management.

Through the ASPI/ACS partnership, the Florida, Louisiana, and Massachusetts Pain Initiatives have revitalized their organizations; built their infrastructure to maximize the expertise and broad base of the Initiative membership; and, increased their ability to accomplish their goals through an ACS-paid staff, Initiative Coordinator. In addition to having a strong desire to conduct public awareness activities, these were key factors in identifying the Initiatives' readiness to engage in the Power Over Pain project.

Building on Past Success: In 2002, the North Florida Chapter of the American Society of Pain Management Nurses, working with the American Pain Foundation as its national partner, used APF's Community Action Kit to successfully launch Power Over Pain in Gainesville, Florida, in 2002. They were responsible for naming the campaign and creating the logo (both action-oriented); conducting educational activities throughout the community; enrolling four competing hospitals in the campaign; and gaining wide local media (print and broadcast) attention. APF provided technical and media support throughout the campaign.

The group recently joined with the Florida Pain Initiative (and has involved a number of other organizations), and now plans to conduct the campaign in approximately eleven cities in 2003. A focus of the campaign will be to concentrate activities around Pain Awareness Month in September.

How the Power Over Pain Pilot will be Implemented
At the beginning of the project APF and ASPI will work intensively with Pain Initiative leaders in Florida, Louisiana, and Massachusetts to help them:

  • Form a coalition that includes other organizations with a stake in pain issues (such as local chapters/divisions of the American Cancer Society, American Society of Pain Management Nurses, The American Chronic Pain Association groups, and others).
  • Identify specific interests and developing activities that address the specific needs of the states/communities.
  • Formulate a basic plan of action and ways to implement the plan (including who will do what).
  • Develop a media strategies that mesh with public awareness activities.

Throughout the project APF and ASPI will:

  • Communicate information about their efforts through APF's and ASPI's communications channels and a new Power Over Pain website.
  • Track, document, and evaluate successes and challenges.

Power Over Pain Public Awareness/Media Components
Distribution of Community Action Kit: Participating State Initiatives and leaders in local communities will be given the Power Over Pain Community Action Kit—a step-by-step, comprehensive, how-to guide (available in a three-ring binder) that will serve as a starting point for launching activities. It is expected that groups will develop additional community-specific activities, and will come up with new ideas. These will be added to the kit and shared with other groups. The Community Action Kit includes:

  • Tips on organizing the community and building local/state coalitions.
  • Concrete, step-by-step activity suggestions, including descriptions of successful state/local pain projects. Some activities include:
    • September as Pain Awareness Month (in conjunction with Partners for Understanding Pain initiative), including how to get state/local proclamations (and sample proclamations, letters to legislators, etc.) organizing local activities, and gaining media attention
    • Conducting a statewide survey, including sample survey instrument and report and media releases (e.g. the Pain in Maryland survey)
    • Fight for Your Rights!—Pain Care Bill of Rights distribution
    • Getting the Pain Care you Need and Deserve—a tested slide presentation (developed by the Gainesville Power Over Pain Team) that can be given at hospitals, nursing homes, libraries, places of worship, etc.
    • Opioid Use and Abuse: Panel Discussion and Town Hall Meeting
  • A comprehensive media guide—Making Pain News and Prescription Abuse Rapid Response Action Kit (developed by ASPI), and lists of state media contacts
  • A comprehensive resource guide
  • Fundraising suggestions

Providing Kits to Other Initiatives and Organizations
Because several Pain Initiatives (in addition to Florida, Louisiana, and Massachusetts) and other organizations have expressed interest in running public awareness campaigns, the Community Action Kit will be made available to leadership in those areas. In those states we will not provide intensive technical assistance, but we will be available to answer questions. In addition, we will communicate regularly with those Initiatives, ask them to document their activities included successes and challenges, and publicize their activities through our communications channels (APF and ASPI websites, newsletters, e-newsletters, etc.). The kit will be made available to Initiatives at no cost. Other organizations will be asked to pay a modest fee.

Technical Assistance
APF and ASPI will provide technical assistance to participating Pain Initiatives. Assistance will include (but not be limited to):

Assistance with Outreach Activities:

  • Face-to face visits to assist in planning the campaign, including developing activities and budgets, and fundraising ideas.
  • Developing messages and program content.
  • Helping to coordinate events.
  • Providing link and access to national experts and resources.

Media Outreach Assistance:

  • Providing state-specific media lists
  • Assist in contacting media (pitch calls, background info, etc)
  • Help design and edit print and/or broadcast products

Evaluation:

  • On-going evaluation of program through regular site visits or phone consults.
  • Evaluate program for the purpose of designing a model for use by other
    State Pain Initiatives and other organizations (e.g., ASPMN and ACPA chapters).

Distribution of Materials (Consumer Hand-outs)
Participating states will be provided with (large quantities) of APF's consumer educational materials to distribute to hospitals, other healthcare facilities, and directly to consumers. Materials include:

  • Pain Action Guide (in English and Spanish)
  • Finding Help for Your Pain: A Pain Resource Guide
  • Pain Care Bill of Rights card (English and Spanish)
  • APF and ASPI newsletters

Organizations conducting the project, but not participating in the pilot, can order materials from APF at a nominal cost, or download them from APF's website.

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