Have you ever been affected by new law or health care policy and wondered what you can do or could have done about it?
Have you ever read or watched a biased news report and wished that the reporter would have done a better job including the voice of people with pain?
Perhaps you’ve seen a local event advertised, and thought that people with pain might be interested in learning more about their conditions and how to cope?
Yes? Well, keep reading…
This part of the website will take you through a variety of ways that you can engage in pain advocacy and give a voice to people with pain. You will see how quick and easy it can be to stand up for your self or someone you love who lives with pain.
Pain Policy Advocacy
Health policy is often thought of only in terms of state and federal legislation; but it is much more than that! “Policy” also refers to regulatory actions; public agency practices; court decisions and rules; private institutional governance; and the formal policy positions of educational, religious, civic, or professional organizations. Policy reform may focus on shaping new policy, strengthening or implementing practices, or assuring accountability through monitoring for policy effectiveness and improvement. Policy reform and policy decisions happen at every level, from local and state to national.
This section provides you with information about state and federal health and pain policy outreach. If this is an area of interest, you might also find useful information in the Access to Pain Care section.
Have you ever thought, “There ought to be a law protecting my right to pain care”? Or wondered why your health care provider said his hands were tied when it came to your prescription medication? Or even found that the medicine you were prescribed by your health care provider was not the same one you received at the pharmacy? You have the power to influence how laws and policies are formed surrounding pain care. While it might seem daunting at first, health policy action can be a simple e-mail or phone call to an elected official voicing your opinion. Policies that elected officials and regulators develop go hand in hand with issues related to access to pain care.
This section provides you with information about pain management media relations outreach.
The media can be a powerful way to raise awareness of pain management issues and convey your key messages (click here for an example of key messages). But, all too often, you may become dismayed to read unbalanced or inaccurate articles that reinforce negative stereotypes about people with pain. As an advocate, you can work with journalists to share your personal perspective and represent the pain community. You can also encourage fair and balanced reporting by submitting letters to the editor and Op-Eds. Op-Eds are opinion pieces that appear opposite the editorial page of local, state, and national newspapers.
Newsrooms have changed dramatically over the last decade. Newspapers, once doomed as a victim of the digital age, have embraced the real-time nature of online news reporting. News outlets are now looking toward “hyper local” features, making your story more relevant than ever. Always remember that you are an expert in your personal or professional pain experience. Reporters rely on people like you to help them put a face to important issues like disparities in pain care.
As the landscapes of news rooms evolve, journalists continue to face increasing demands and shrinking budgets. More than ever, when working with reporters, it is important to do your homework and be prepared.
This section provides you with information about reaching out on a community level with your pain management messages (click here for an example of key 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. 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.
Access to Pain Care
This section includes information about advocating for access to optimal and affordable pain care. Pain policy and regulation are often the starting point for whether or not people have difficulty accessing optimal pain care and include health care reform. Be sure to check out the section Pain Policy Advocacy if this is of interest to you!
Health Care Professional Advocacy
This section is intended for use by health care professionals to explore additional ways that you can advocate for better pain management through your employers, professional societies or state licensing boards.
As a health care professional, you can advocate for pain management on a professional level through administrators of health care institutions such as hospitals, clinics, and HMOs (especially those with specialized pain centers or community pain control outreach programs); local or regional chapters of the professional or specialty organizations that granted your board certification or professional credentials; health care systems (including hospitals, clinics, and HMOs) that you interact with on a regular basis.
Pain Research for Patients
This section is intended for people who live with pain, their caregivers, families and loved ones. While pain is often considered a universal experience, it receives relatively low funding from a national research perspective. It can take up to fifteen years to develop one new medicine from the earliest stages of discovery to the time it is available for treating patients. Many of the drugs coming to the market in 2007 were in the early stages of discovery fifteen years ago, in 1992.iPharmaceutical Research and Manufacturers Association of America. Innovation.org. “Inside Innovation: the Drug Discovery Process.”http://www.innovation.org/index.cfm/InsideDrugDisc
overy/Inside_Drug_Discovery Accessed July 27, 2012. Advocacy efforts are increasing awareness about the need for investment in pain research, but what does that mean for you?
If you are going to advocate for increased funding for pain research, it’s a good idea to be familiar with what clinical research is about. Clinical trials hold promise into new treatments and possibly even cures for painful diseases. Depending on the source of your pain, you may be eligible to participate in a clinical trial.
But, there are risks associated with participating in clinical research. Only a small percentage of treatments at the beginning of the research and development process ever become available. Because the potential treatments have not been thoroughly evaluated, they are still considered experimental. One of the more disappointing outcomes of a clinical trial is that a new treatment simply does not work.
You will find basic information in this section about what clinical trials are, what happens during clinical trials and resources to explore more information about pain-related research.