Advocacy 101

Basics of Advocacy

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What Can You Do?

Advocacy can be as simple as helping to speak up for the rights of a friend or loved one in pain to testifying before Congress to ensure that voices of those most affected by pain are included in pain policies.

Ways that you can advocate for the rights of people with pain include:

  • Knowing the rights of people with pain and having the courage to speak up about those rights.
  • Becoming educated about issues surrounding appropriate treatment of pain.
  • Increasing visibility of issues related to pain in your community.
  • Building a network of pain advocates that will help you increase your voice and spread your message.
  • Reaching out to people who are influential in raising awareness and determining pain-related policy, such as journalists or elected officials, as well as those in the greater community who will benefit most by learning about their rights to pain care.
  • Serving as a voice for people in pain through your professional organizations and through research.

Ready to get started? Check out the Take Action section.

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Self Advocacy

Self advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs and rights. It involves making informed decisions and taking responsibility for those decisions. Whether you are a person with pain, a caregiver, or someone who advocates on the behalf of others, self advocacy is an essential skill to learn and embrace.

Self advocacy is important. It is about understanding your strengths and needs, identifying your personal goals, knowing your legal rights and responsibilities and then communicating these to your family, friends, and your health care team. This is the first step in your journey to ensure the appropriate diagnosis and treatment for your pain.

Through being your own advocate, or an advocate for someone you care about, you become empowered – with information, knowledge and self-respect. Health care professionals can also play a key role by supporting their patients’ efforts toward self advocacy.

Please view the video below to get started on your journey into self advocacy. We hope that the information and resources on the In the Face of Pain website are helpful to you in your pain advocacy efforts.

Click here to view the “Self Advocacy” video

This video is an introduction to self advocacy and why it should be important to you. Whether you are a person with pain, a caregiver or someone who advocates on the behalf of others, self advocacy is an essential skill to learn and embrace. YOU may be the only resource that assists your health care team in delivering you the quality care you want and deserve. You are your most important advocate!

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Barriers to Pain Management

Unfortunately, many barriers prevent effective pain assessment and treatment. Health care professionals are concerned about their patients, patients are concerned about their health, and the health care system struggles with providing appropriate and effective health care at a cost that can be sustained. However, over time, each of these groups has contributed to building barriers to proper pain management and making them appear insurmountable. This is where advocacy can help make a difference.

As an advocate, YOU are a part of the solution in helping to overcome these barriers. By sharing your story and consistently communicating your key messages to audiences such as your community, the media, legislative bodies, and your peers, YOU are a part of the team that raises awareness of pain management issues and breaks down the barriers to effective pain care.

In its landmark report, “Relieving Pain in America,” the Institute of Medicine (IOM) identified a number of barriers that prevent people with pain from receiving optimal pain care. These barriers come from health care professionals, insurance and reimbursement issues, and even perceptions from patients themselves. The committee that authored the report found that multiple and significant barriers to pain care and management exist, particularly in the primary care setting. These barriers include:iIOM (Institute of Medicine). 2011. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press.

  • The magnitude of the pain problem, including its extremely high prevalence, which makes effective action difficult on a national scale;
    • certain provider attitudes and training, which impede the delivery of high-quality care;
    • insurance coverage, because fully one-third of all Americans are uninsured or underinsured;
    • cultural attitudes of patients, many of whom do not recognize the need to address pain early on; and,
    • geographic barriers, which place residents of rural communities at a disadvantage.
  • Gaps in knowledge and competencies related to:
    • pain assessment and management;
    • cultural attitudes about pain;
    • negative and ill-informed attitudes about people with pain; and,
    • stereotyping and biases that contribute to disparities in pain care.
  • System and organizational barriers, many of them driven by current reimbursement policies, obstruct patient-centered care. Examples of these barriers are:
    • minimal capacity for frequent visits when necessary;
    • limited time to conduct comprehensive assessments;
    • inadequate patient education initiatives;
    • difficulties in accessing specialty care; and,
    • lack of reimbursement for needed specialty care services, interdisciplinary practice, psychosocial and rehabilitative services, in-depth patient interviews and education, and time spent planning and coordinating care.
  • Regulatory, legal, educational, and cultural barriers that inhibit the medically appropriate use of prescription pain medication.

The IOM committee also developed a number of recommendations to address these barriers, including the development of a population-level strategy that helps identify and develop comprehensive approaches to overcoming barriers. Specific recommendations include:iIOM (Institute of Medicine). 2011. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press.

  • Providing educational opportunities in pain assessment and treatment in primary care. Health care professional education and training programs, professional associations, and other groups that sponsor continuing education for health professionals should develop and provide educational opportunities for primary care practitioners and other providers to improve their knowledge and skills in pain assessment and treatment.
  • Supporting collaboration between pain specialists and primary care clinicians, including referral to pain centers when appropriate. Pain specialty professional organizations and primary care professional associations should work together to support the collaboration of pain specialists with primary care practitioners and teams when primary care providers have exhausted their expertise and the patient’s pain persists.
  • Revising reimbursement policies to foster coordinated and evidence-based pain care. Payers and health care organizations should work to align payment incentives with evidence-based assessment and treatment of pain. Optimal care of the patient should be the focus.
  • Providing consistent and complete pain assessments. Health care providers should provide pain assessments that are consistent and complete and documented so that patients will receive the right care at the right place and the right time.

While the barriers to pain care may seem insurmountable at times, professional organizations, government agencies and third-party advocacy groups are working every day to help bring the IOM committee’s recommendations to life. As a person who lives with pain, YOUR voice is an essential part of bringing about the change that will improve pain care.

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Key Messages About Pain

Download a PDF of “Key Messages About Pain”

Pain is a national health care crisis. It is our nation’s hidden epidemic.

  • According to the Institute of Medicine (IOM), approximately 100 million adults in the United States suffer from common chronic pain conditions.iIOM (Institute of Medicine). 2011. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press.
  • The annual cost of chronic pain in the U.S. is estimated to be $560-635 billion, including health care expenses, lost income, and lost productivity.iIOM (Institute of Medicine). 2011. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: The National Academies Press.

When pain is properly managed, many people can resume their lives.

  • Finding good pain care can be a challenge, but persistence can pay off – don’t give up.
  • Learn about treatment options available. Often, pain management requires an integrative and multi-modal treatment approach. This could mean combining the use of pain medication with surgical interventions and complementary approaches like physical therapy, massage and acupuncture. But, remember that pain is unique – what works for you might not work for someone else.
  • People often mistakenly believe that pain is something they “just have to live with.” They are often made to feel that the pain is “just in their heads.” Seek out support and offer it to others in their pain journey; validation and letting someone know that you believe their reports of pain can be a lifeline!

People with pain are a central component to the pain care team, and must take an active role in their care.

  • Through being your own advocate, or an advocate for someone you care about, you become empowered – with information, knowledge and self-respect.
  • The IOM recommends that health care provider organizations take the lead in developing educational approaches and materials for people with pain and their families that promote and enable self-management.
  • Following a treatment plan and the safe storage and disposal of medications are important components of appropriate self-management of pain.

People who live with pain have a right to appropriate assessment and treatment of their pain.

  • While pain can affect anyone regardless of gender, race or economic status, some people have difficulty getting adequate pain care. Women, certain ethnic groups and the elderly are more likely to be denied appropriate pain treatment.ii,Gagliese L. “Pain and Aging: The Emergence of a New Subfield of Pain Research.” J Pain. 2009 Apr;10(4):343-53. iii,Hoffmann D, Tarzian A. “The girl who cried pain: a bias against women in the treatment of pain.” J Law Med Ethics. 2001 Spring;29(1):13-27. ivGreen C, Anderson KO, Baker TA, et al. “The Unequal Burden of Pain: Confronting Racial and Ethnic Disparities in Pain.” Pain Med. 2003 Sep;4(3):277-94.
  • People who suffer from pain and their loved ones need to speak with their health care professional and take an active role in managing their pain.
  • Pain can and should be treated. We all have a right to proper medical care.

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