As a health care professional and an advocate for appropriate and timely pain care, you can help make a difference in the lives of your patients starting right now. These are some basic tips to get started:

Prepare

• Think about your goal in reaching out to professional peers and organizations. Consider the following questions:
• What are your key messages (click here to learn more about key messages)? Are you concerned with patient care, pain as a public health issue, access to appropriate evaluation and care, the pharmacologic management of pain, or regulatory issues in pain management? Or, all of the above?
• Who are the right people to contact?
• What supporting material can you use?
• Does your organization or employer have existing guidelines about pain management with which you agree? Do you disagree?
• Have the journals that you read published articles, a statement, or guidelines on pain management? Do you agree with them or disagree with them? Should there be more related topics and issues to discuss?

• Identify your existing contacts. Your own personal network of professional contacts is the best place to begin your professional advocacy efforts. Find and get to know the “right” contacts. While individuals are the power behind organizations, there are a select few people in leadership positions. Key contacts include heads of local, state/regional, or national associations, and editors of publications.

• Utilize your own “backyard.” Set up and choose topics related to the assessment and treatment of pain at your worksite. Help to provide education to community practitioners (e.g., at a health system, hospital, community or chain pharmacy). More specific information about this type of activity is included in the Community Outreach section.

Network

• Join a professional organization and attend the meetings. Local meetings provide good opportunities to network and become involved with professionals who are already active. They welcome people who are willing to volunteer on education committees, community outreach/education, and joining or starting a pain management group (a group of professionals within the organization who have common interests in a disease state). Where do pain care and pain policy fit into their agenda? Nominate someone for an award at the association for work in advancing pain patients’ care.

• Determine if the group has any pain-related patient education, has conducted community outreach, or is active regarding legislative/regulatory issues that could be related to your cause. Research the organization’s stance on pain management. Do they have committees that may address these issues (e.g., legislative/regulatory monitoring/actions committees, a clinical academy, interests in pain management, palliative and end-of-life care)? Does the state or national organization support a legislative day?

• Investigate professional organizations that have current political action centers. Is pain legislation or policy support on their agenda? If not, why? If so, what can you do to further encourage members of the organization to write to their legislators and state decision makers?

• Participate in networking opportunities. Local, regional, and national meetings provide excellent networking opportunities. National meetings in particular provide the opportunity to meet advocates across many disciplines.

Stay Informed

• Learn about REMS. Risk Evaluation Mitigation Strategies (REMS) is currently a rapidly changing area that impacts professional practice for those providing pain care. Visit the Pain Policy Advocacy: Basics of Regulatory page section of this site for more information about REMS.

• Keep abreast of articles and editorials published in peer-reviewed journals. Make your voice heard by responding in either agreement or disagreement through letters to the editor.

• Educate young professionals. Contact your alma mater or the local colleges and universities to provide training to professionals to ensure that their pain management curriculum is comprehensive, updated, and accurate. Offer to work with students, residents, and trainees to help them understand the importance of proper pain management.

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State licensing boards set minimum standards for professionals such as physicians, nurses and pharmacists. They determine minimum standards of practice and testing for licensure to practice, including continuing education requirements, which may or may not include pain management. They are also responsible to enforce standards and relevant regulations and laws. Each board is varied in their activities and staffing. There is usually an executive board that includes licensed practitioners, members from the public and staff people employed to manage the licensing board daily activities.

State licensing boards are often charged with protecting the public and promoting the health and welfare of their citizens. Because of the large number of health-related issues that they deal with, these boards may or may not be informed of current pain management topics.

Professional board members are often influential in legal and regulatory activities affecting medical practice and may be able to open political doors if they become aware of issues affecting patients in pain and the health care professionals who treat them.

Here is what you can do:

• Attend open, public meetings. You can find out the dates and locations of these meetings by checking the board’s website or contacting the board to be added to their mailing list. Many boards are required to publicly announce the meetings and agendas they hold that are open to the public

• Introduce yourself to the board members and staff

• Write letters to the board regarding appropriate pain management

• Testify on relevant pain management issues

• Encourage your professional association to demonstrate their support, as they usually have contact with the licensing board

Many state licensing boards now include a position for Consumer Advocates. If you work with a person in pain or caregiver that you think would be a good fit for this position, encourage them to apply for the position and help them to make the connection. As a health care provider, you may also have the opportunity to get involved as a member of the board. Additionally, help make connections between local chapters of consumer groups that you are affiliated with and the state licensing boards. Unique, personal and real stories often provide the “human” perspective to data and statistics.

Some states have laws requiring meetings by “public bodies,” such as legislative, executive, or advisory committees (including licensing boards), to be public. National licensing organizations can direct you to your state contacts; a few examples are shown below:

• Acupuncture (varies according to state): National Certification Commission for Acupuncture and Oriental Medicine

• Nurses: National Council on State Boards of Nursing – State Directory

• Pharmacists: National Association of Boards of Pharmacy – State Directory

• Physical Therapists: Federation of State Boards of Physical Therapy

• Physicians: Federation of State Medical Boards – State Directory of Medical and Osteopathic Boards

• Physician Assistants: National Commission on Certification of Physician Assistants

• Social Workers: Association of Social Work Boards

For more information about advocating for better pain care through state licensing boards and other regulatory bodies, visit the Pain Policy Advocacy section.

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In the forefront of pain research are scientists supported by the National Institutes of Health (NIH), including the National Institute of Neurological Disorders and Stroke. Other institutes at NIH that support pain research include the National Institute of Dental and Craniofacial Research, the National Cancer Institute, the National Institute of Nursing Research, the National Institute on Drug Abuse, and the National Institute of Mental Health. Developing better pain treatments is the primary goal of all pain research being conducted by these institutes.

In the summer of 2009, key elements of the National Pain Care Policy Act were incorporated into the Patient Protection and Affordable Healthcare Act, which President Barack Obama signed into law on March 23, 2010. These provisions include:

• Mandating an Institute of Medicine (IOM) conference on pain to address key medical and policy issues affecting the delivery of quality pain care; this has been completed. Click here to access the IOM report.

• Establishing a training program to improve the skills of health care professionals to assess and treat pain.

• Enhancing the pain research agenda for the National Institutes of Health (NIH).

Advocacy organizations are now working with appropriations committee members to ensure that this portion of the law is adequately funded. Check with pain-related organizations for the latest updates and ways that you can support.

Pain Research on the Horizon

One objective of investigators working to develop the future generation of pain medications is to take full advantage of the body’s pain “switching center” by formulating compounds that will prevent pain signals from being amplified or stop them altogether. Blocking or interrupting pain signals, especially when there is no injury or trauma to tissue, is an important goal in the development of pain medications. An increased understanding of the basic mechanisms of pain will have profound implications for the development of future medicines.

The following areas of research are bringing us closer to better pain care:

• Systems and imaging: The idea of mapping cognitive functions to precise areas of the brain dates back to phrenology, the now archaic practice of studying bumps on the head. Positron emission tomography (PET), functional magnetic resonance imaging (fMRI), and other imaging technologies offer a vivid picture of what is happening in the brain as it processes pain. Using imaging, investigators can now see that pain activates at least three or four key areas of the brain’s cortex – the layer of tissue that covers the brain. Interestingly, when patients undergo hypnosis so that the unpleasantness of a painful stimulus is not experienced, activity in some, but not all, brain areas is reduced. This emphasizes that the experience of pain involves a strong emotional component as well as the sensory experience, namely the intensity of the stimulus.

• Channels: The frontier in the search for new drug targets is represented by channels. Channels are gate-like passages found along the membranes of cells that allow electrically charged chemical particles called ions to pass into the cells. Ion channels are important for transmitting signals through the nerve’s membrane. The possibility now exists for developing new classes of drugs, including pain cocktails that would act at the site of channel activity.

• Trophic factors: A class of “rescuer” or “restorer” drugs may emerge from our growing knowledge of trophic factors, natural chemical substances found in the human body that affect the survival and function of cells. Trophic factors also promote cell death, but little is known about how something beneficial can become harmful. Investigators have observed that an over-accumulation of certain trophic factors in the nerve cells of animals results in heightened pain sensitivity, and that some receptors found on cells respond to trophic factors and interact with each other. These receptors may provide targets for new pain therapies.

• Molecular genetics: Certain genetic mutations can change pain sensitivity and behavioral responses to pain. People born genetically insensate to pain – that is, individuals who cannot feel pain – have a mutation in part of a gene that plays a role in cell survival. Using “knockout” animal models – animals genetically engineered to lack a certain gene – scientists are able to visualize how mutations in genes cause animals to become anxious, make noise, rear, freeze, or become hypervigilant. These genetic mutations cause a disruption or alteration in the processing of pain information as it leaves the spinal cord and travels to the brain. Knockout animals can be used to complement efforts aimed at developing new drugs.

• Plasticity: Following injury, the nervous system undergoes a tremendous reorganization. This phenomenon is known as plasticity. For example, the spinal cord is “rewired” following trauma as nerve cell axons make new contacts, a phenomenon known as “sprouting.” This in turn disrupts the cells’ supply of trophic factors. Scientists can now identify and study the changes that occur during the processing of pain. For example, using a technique called polymerase chain reaction (PCR), scientists can study the genes that are induced by injury and persistent pain. There is evidence that the proteins that are ultimately synthesized by these genes may be targets for new therapies. The dramatic changes that occur with injury and persistent pain underscore that chronic pain should be considered a disease of the nervous system, not just prolonged acute pain or a symptom of an injury. Thus, scientists hope that therapies directed at preventing the long-term changes that occur in the nervous system will prevent the development of chronic pain conditions.

• Neurotransmitters: Just as mutations in genes may affect behavior, they may also affect a number of neurotransmitters involved in the control of pain. Using sophisticated imaging technologies, investigators can now visualize what is happening chemically in the spinal cord. From this work, new therapies may emerge, therapies that can help reduce or obliterate severe or chronic pain.

Hope for the Future

Thousands of years ago, ancient peoples attributed pain to spirits and treated it with mysticism and incantations. Over the centuries, science has provided us with a remarkable ability to understand and control pain with medications, surgery, and other alternative and complementary treatments. Today, scientists understand a great deal about the causes and mechanisms of pain, and research has produced dramatic improvements in the diagnosis and treatment of a number of painful disorders. For people who fight every day against the limitations imposed by pain, the work of National Institutes of Health. National Institute of Neurological Disorders and Stroke (NINDS)-supported scientists holds the promise of an even greater understanding of pain in the coming years. Their research offers a powerful weapon in the battle to prolong and improve the lives of people with pain: hope.i National Institutes of Health. National Institute of Neurological Disorders and Stroke. “Pain: Hope Through Research.” http://www.ninds.nih.gov/disorders/chronic_pain/de
tail_chronic_pain.htm#175133084. Accessed May 30, 2012.

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In 2009, America’s pharmaceutical and biotechnology research companies set a new record for biopharmaceutical research spending with an investment of 65.3 billion to develop new medicines and vaccines. Today, nearly 3,000 new molecules are in development or are awaiting U.S. Food and Drug Administration approval. Many of these potential new medicines will fail in clinical trials, but some may represent tomorrow’s new treatments. Bringing each new medicine to patients will require, on average, 10 to 15 years of testing and review.ii Pharmaceutical Research and Manufacturers of America “Chartpack: Biopharmaceuticals in Perspective” www.innovation.org. Accessed May 30, 2012.

While pain research shows promise, funding at the federal level remains woefully inadequate.

A report from the Mayday Fund released in November 2009 called for the NIH to:

…increase funding for pain research to a level that is commensurate with the size of a public health problem that affects millions of people. The research should put an emphasis on emerging therapies and translational research, comparative effectiveness trials, bio-behavioral treatments, and health services research, as well as basic science. More research should focus on ways to prevent acute pain from developing into a chronic illness and to prevent childhood chronic pain from becoming a lifelong condition.iiiThe Mayday Fund. “A Call to Revolutionize Chronic Pain Care in America: An Opportunity in Health Care Reform.” November 4, 2009. p 10.http://www.maydaypainreport.org/docs/A%20Call%20to
%20Revolutionize%20Chronic%20Pain%20Care%20in%20Am
erica.pdf. Accessed May 30, 2012. 

By informing your community about clinical trials, you can help people make informed decisions about their treatment or prevention options, including the option of participation in a clinical trial. The more people that participate in clinical trials, the faster we can answer the critical research questions that will lead us to better treatment and prevention options.

The National Cancer Institute has developed the guide Cancer Clinical Trials: A Resource Guide for Outreach, Education, and Advocacy that includes information about promoting clinical trials through community outreach, media relations and one-on-one interaction.

You may also be interested in becoming a clinical researcher. Professional organizations such as the American Pain Society have information on how to become involved in pain clinical research.

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Health care professionals can provide a great service to their patients when discussing and considering participation in clinical trials. Potential candidates are encouraged to use the information they find on clinical trial sites in conjunction with information from their health care providers when evaluating the important decision to participate in medical research. The following websites provide more information about clinical trial participation and the status of pain-related studies.

• ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov provides information about a trial’s purpose, who may participate, locations, and phone numbers for more details. ClinicalTrials.gov currently has more than 126,000 trials with locations in 179 countries, and lists information about more than 11,000 trials related to pain.

• CenterWatch lists more than 80,000 active clinical trials seeking study volunteers each month, involving new drugs and devices regulated by the FDA and the Department of Health and Human Services. There are currently more than 1,100 clinical trials underway for pain and pain-related conditions across the country. Listings are posted across a wide range of medical conditions and are searchable by therapeutic area, disease or geographic location.

• MedlinePlus is a web-based information service from the National Library of Medicine. Its “Health Topics” section has extensive information from NIH and other trusted sources on hundreds of diseases and conditions, including a link to clinical trials. It also includes an informative “Clinical Trials” health topic page, with material in Spanish, and an interactive tutorial on clinical trials.

• The National Heart, Lung and Blood Institute offers more information and videos about the importance of including children in clinical trials.

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Sources of Funding for Pain Research

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 visiting our e-newsletter section of the website. Professional societies are also a resource for research grants.

Center to Advance Palliative Care (CAPC) Guide to Building a Hospital-Based Palliative Care Program

The Center to Advance Palliative Care (CAPC) has published “The Guide to Building a Hospital-Based Palliative Care Program.” This “how-to” handbook provides palliative care professionals with step-by-step guidance along with sample tools, forms, policies and procedures that can be easily adapted to their hospital.

Drawing on the experiences of a variety of thriving palliative care programs, there are five stages to launching and running a quality program:

1. Making the Case for Palliative Care

2. Designing a Palliative Care Program

3. Financing a Palliative Care Program

4. Implementing a Palliative Care Program

5. Measuring Quality & Impact of Palliative Care Programs

The information in the five sections above provides guidelines that assist palliative care proponents to establish successful, lasting programs in their own institutions. For more information, visit: www.capc.org/building-a-hospital-based-palliative-care-program.

Nurses and Pharmacists CARE (Compassionate Attentive Responsive Educational) through Partners for Understanding Pain, Nurses’ Pain Awareness Events

Nurses and Pharmacists are the front line in pain management. The campaigns are part of September Pain Awareness Month activities developed by Partners for Understanding Pain. The goal is to educate both health care providers and consumers at all levels of treatment and therapy. In addition, the campaigns seek to put pain on the national health care agenda as an issue that needs our immediate attention. Your involvement will ensure that the messages get out to the public.

By sponsoring a Pain Awareness Day within your clinical setting, you can make a difference in the assessment, treatment, and long-term management of pain. The goals of the CARE campaigns are to:

• Create a focus on pain within a range of clinical settings

• Engage the “front line” of patient care in a more informed and sensitive response to pain

• Increase communication between patient and health care providers

• Provide a catalog of resources to nurses in a wide range of settings for their use in helping patients and the public

• Generate community awareness through buttons and posters to be displayed in the facility during September

Suggested events include:

• Luncheon conference with expert speaker in pain management

• Lecture series on assessment and treatment of pain throughout the day

• Health fair of community resources for people with pain

• Seeking out opportunities to speak at community clubs and service organizations about the importance of prevention of long-term pain by treating pain at the on-set, awareness of local health care resources and information about pain management

• Distribution of buttons to all staff members attached to flyer about pain assessment and management

The nurses and pharmacist toolkits can be accessed through the Partners for Understanding Pain link of the American Chronic Pain Association.

If you are sponsoring an event through your hospital, pharmacy or practice, consider submitting it on the In the Face of Pain “News & Events” calendar. Click here to submit.

The Oncology Nursing Society Media Response Team

The ONS Media Response Team (MRT) works hard to make sure that oncology nurses are represented in the media. They are looking for nurses treating patients with cancer who are subject area experts and are willing to respond to media inquiries within 24 hours. MRT participants will be published in a directory that will be sent to oncology trade journalists and key media representatives. MRT members will receive a quarterly newsletter offering tips and techniques on how to effectively work with the media. For more information, please e-mail Jeanette Kent, Public Relations Manager at jkent@ons.org.

National Association of Social Workers Media Toolkit

NASW maintains a spokesperson database of member social workers with a wide range of expertise who are available to speak with journalists on local or national issues. If you are a social worker and a member of NASW, please complete the NASW Media Referral Database Application Form to be considered for the NASW Media Expert Database. Click here to find more information.

Professional Media Advocacy Training Programs

Health care professionals who have an advanced interest in pain media advocacy may be interested in the Mayday Fund’s Mayday Pain & Society Fellowship: A Media and Policy Initiative. Established by The Mayday Fund 2004, the program trains physicians, nurses, pharmacists, social workers, scientists, and legal scholars in the pain management community to go beyond their own professional pursuits to become leaders in the pain field, and ultimately have real impact on the lives of people in pain.

Pain-Related Health Care Professional Organizations

American Academy of Craniofacial Pain
1901 North Roselle Road, Suite 920
Schaumburg, IL 60195-3187
Phone: (800) 322-8651
Phone: (847) 885-1272
Fax: (847) 885-8393
E-mail: central@aacfp.org
www.aacfp.org

American Academy of Hospice and Palliative Medicine
4700 West Lake Avenue
Glenview, IL  60025-1485
Phone: (847) 375-4712
Fax: (847) 375-6475
E-mail: info@aahpm.org
www.aahpm.org

American Academy of Pain Management
975 Morning Star Drive, Suite A
Sonora, CA 95370
Phone: (209) 533-9744
Fax: (209) 533-9750
E-mail: rosemary@aapainmanage.org
www.aapainmanage.org

American Academy of Pain Medicine
4700 West Lake Avenue
Glenview, IL 60025
Phone: (847) 375-4731
Fax: (847) 375-6429
E-mail: info@painmed.org
www.painmed.org

American Pain Society
4700 West Lake Avenue
Glenview, IL  60025
Phone: (847) 375-4715
Fax: (866) 574-2654
Fax: (847) 375-6479
Fax: (732) 460-7318
E-mail: info@ampainsoc.org
www.ampainsoc.org

American Society of Addiction Medicine
4601 N. Park Avenue, Upper Arcade Suite 101
Chevy Chase, MD  20815
Phone: (301) 656-3920
Fax: (301) 656-3815
E-mail: email@asam.org
www.asam.org

American Society of Anesthesiologists
520 N. Northwest Highway
Park Ridge, IL  60068-2573
Phone: (847) 825-5586
Fax: (847) 825-1692
E-mail: mail@asahq.org
www.asahq.org

American Society for Pain Management Nursing
P.O. Box 15473
Lenexa, KS 66285-5473
Phone: (888) 34-ASPMN (27766)
Phone: (913) 895-4606
Fax: (913) 895-4652
E-mail: aspmn@goamp.com
www.aspmn.org

American Society of Regional Anesthesia and Pain Medicine
520 N. Northwest Highway
Park Ridge, IL 60068-2573
Phone: (847) 825-5586
Fax: (847) 825-5658
E-mail: j.kahlfeldt@asahq.org
www.asra.com

Center to Advance Palliative Care
1255 Fifth Avenue, Suite C-2
New York, NY 10029
Phone: (212) 201.2670
www.capc.org/

Hospice and Palliative Nurses Association
1 Penn Center West, Suite 229
Pittsburgh, PA 15276-0100
Phone: (412) 787-9301
Fax: (412) 787-9305
E-mail: hpna@hpna.org
www.hpna.org

International Association of Hospice and Palliative Care
5535 Memorial Drive
Suite F-PMB 509
Houston, TX 77007
Phone: (866) 374-2472
Phone: (936) 321-9846
Fax: (713) 880-2948
www.hospicecare.com

International Association for the Study of Pain
111 Queen Anne Avenue North, Suite 501
Seattle, WA  98109-4955
Phone: (206) 283-0311
Fax: (206) 283-9403
E-mail: iaspdesk@iasp-pain.org
www.iasp-pain.org

National Hospice & Palliative Care Organization
1731 King Street, Suite 100
Alexandria, VA 22314
Phone: (703) 837-1500
Fax: (703) 837-1233
E-mail: nhpco_info@nhpco.org
www.nhpco.org

National Institutes of Health
National Cancer Institute
Public Inquiries Office
6116 Executive Boulevard
Suite 300
Bethesda, MD 20892-8322
Phone: 1-800-4-CANCER (1-800-422-6237)
www.cancer.gov

National Institute of Dental and Craniofacial Research
National Institutes of Health
Bethesda, MD 20892-2190
Phone: (866) 232-4528
Fax: (301) 480-4098
E-mail: nidcrinfo@mail.nih.gov

National Institute of Neurological Disorder and Stroke
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Phone: (800) 352-9424 or (301) 496-5751
TTY (for people using adaptive equipment): (301) 468-5981
www.ninds.nih.gov

National Institute of Mental Health
Science Writing, Press, and Dissemination Branch
6001 Executive Boulevard, Room 8184, MSC 9663
Bethesda, MD 20892-9663
Phone: (301) 443-4513 (local)
Phone: (866) 615-6464 (toll-free)
TTY: (301) 443-8431
TTY toll-free: (866) 415-8051
Fax: (301) 443-4279
E-mail: nimhinfo@nih.gov
www.nimh.nih.gov

National Institute of Nursing Research
National Institutes of Health
31 Center Drive, Room 5B10
Bethesda, MD 20892-2178
Phone: (301) 496-0207
Toll Free: (866) 910-3804
TTY: (301) 594-5605
Fax: (301) 480-8845
www.ninr.nih.gov

National Institute on Drug Abuse
National Institutes of Health
6001 Executive Boulevard, Room 5213
Bethesda, MD 20892-9561
Phone: (301) 443-1124
Phone: (240) 221-4007 en español
E-mail: information@nida.nih.gov
www.nida.nih.gov

Oncology Nursing Society
125 Enterprise Drive
Pittsburgh, PA 15275-1214
Phone: (866) 257-4ONS (667)
Phone: (412) 859-6100
Fax: (877) 369-5497
Fax: (412) 859-6162
E-mail: customer.service@ons.org
www.ons.org

Resources verified May 2012.

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Plan:

• Evaluate your institution’s practices against current accreditation standards and guidelines (e.g., Joint Commission, Agency for Healthcare Research and Quality, Commission on Accreditation of Rehabilitation Facilities or the American Pain Society).
• Evaluate your circle of colleagues and associates from your place of work, alma mater and professional societies and determine who may be influential in supporting initiatives to improve pain care.
• Consider whether or not you can help advocate for people with pain through these connections.
• Determine the best way for you to utilize your credentials to help support people with pain. Will you testify before a state licensing board? Encourage your patients to consider a clinical trial?

Do:

• Stay informed of current events in the pain community through journals and professional society meetings. Consider joining or starting a special interest group about pain or pain advocacy.
• Connect with your contacts to discuss your pain advocacy outreach efforts.
• Consider how you can help with other forms of advocacy, including media and community outreach.
• Advocate for your patients in pain!

Check:

• Make sure that you inform your employer’s public affairs department that you are interested and available to speak out on behalf of people with pain.

Act:

• Consider more formally engaging in a media training or professional pain advocacy program.
• Get started with your pain advocacy efforts – your patients need your support!

Download the Checklist

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