A Patient Powered Network: Change Agents for Relieving Pain in America by Celeste Cooper

A Patient Powered Network

Relieving pain in Kansas City (RPnKC) is a patient-powered leadership group with the goal of securing and promoting clinical data research network (PPRN) based on a collaborative, community-driven, community-based participatory research model. We are a group that believes patients have a role to teach others on important key issues based on improving our outcome as people living with chronic pain.

You can be a leader too - read on!

As participants in this patient powered research network, RPnKC patient leaders are united in an effort to change the way pain is “perceived, judged, and treated” as outlined in the Institute of Medicine Report “Relieving Pain in America: A Blueprint for Transforming Prevention,Care, Education, andResearch.”  We feel privileged for the opportunity to use OUR VOICE to influence research on therapies, coordinated care, alternative and integrative medicine, access to care, quality care without bias, research regarding many factors that influence chronic pain, and much more. The Center for Practical Bioethics through their PAINS Project   hold  us to the highest esteem, both in their hands and in their hearts.

Patient Outcome Based Research - By for and with Patients

We are an eclectic group with a variety of chronic pain conditions and backgrounds who have come together for this collaborate effort. We want to be part of the transformation. We want to work collectively with anyone who is willing to promote us in an effort to seek patient outcome based research that will solve the epidemic of untreated or undertreated pain, and we are achieving that goal. We understand, and we want our providers to understand that we are more than our pain, and that pain affects us physically, emotionally, socially, financially, and spiritually. We think it is important that our voices be heard.   Each of us has our own ideas based on our individual experiences, and for the first time, patients will influence research that answers questions posed by us. 

The Right to Ethical Treatment

We believe that we have the right to moral and ethical treatment of our pain, that we have the right not to be judged because we are in pain, and that we have the right to treatments focused on improving our outcome that fit within individual conceptual framework, support safety nets, and to speak up for those less fortunate. In an effort to promote our beliefs, we advocate for research, not only for ourselves as patients in pain, but for over 100 million Americans.

We believe we can set an example that will resonate across America, and we can do that best by participation in this important movement. We can do this despite the obstacles we face every day because we live with chronic pain. Never before have we had the opportunities provided by the vast experience and abilities offered by the many organizations and health centered research organizations, healthcare institutions, and others who are coming together to support the Center for Practical Bioethics in this endeavor.

Find Power in Your Voice

It is our greatest desire that you too will have such an opportunity in your area. I encourage you to share information with your legislators, your local medical groups, local media, and reach out by joining the PAINS Project and encouraging others to do the same. You too deserve to feel empowered as part of this national movement. If you have questions on how to do that contact MaryBennett, Alliance Development Director. 

Sincerely, Celeste Cooper 

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"Adversity is only an obstacle if we fail to see opportunity."  

Healing What Hurts: The Politics of Pain: A Symposium Overview by Celeste Cooper

The Dinner

The energy in the room was palpable at the Center for Practical Bioethics dinner. Two outstanding women, Kathleen M Foley, MD (who would be speaking the next day) and Noreen M. Clark, PhD (posthumous) were recognized for their dedication and commitment to palliative care with the “Vision to Action Award." 

Keynote speaker Keith Wailoo, PhD gave us a look at the history of pain, its perception, and its treatment through the years with the overview of his book “Pain: A Political History.” 

People from the “Center” as they refer to themselves are the remarkable people I am privileged to know. The theme, Healing What Hurts, was resonate. Hundreds of eye’s moistened, and the audience was moved as fellow patient leaders from “Relieving Pain in Kansas City” shared their poignant stories in an interview video. It is because those at the Center give their time and talent that we, as patients, have a voice. So often, we only hear the negatives of pain, but being part of the Pain Action Alliance to Implement a National Strategy (PAINS),  an initiative of the Center, is energizing and empowering. 

http://www.practicalbioethics.org/  

Day two

Welcomed by Dr. Marc Hahn, the day got a terrific start with introductions and an overview on chronic pain by Myra Christopher. We were introduced to Joan Berkley’s family, who are kind and caring, no surprise. Joan Berkley was a board member of the Center of Practical Bioethics and dedicated her time and her memorial to ethical treatment of patients. Her legacy lives on in this eighth year of the Joan Berkley Bioethics symposiums.

Healing What Hurts: The Politics of Pain

Throughout the day, we heard about every aspect of pain and politics. I appreciated the opportunity to engage with the speakers, the topics, and other members in the audience. The day was full of information on the many things that affect the politics of pain and its impact on patient care. We explored the need for evidence-based policies on state and national levels, and we heard from a patient living with pain, Janice Lynch Schuster, who represents those of us who live with a stigma for no other reason than we experience chronic pain. 

Dr. Wailoo, author of Pain: A Political History, and Dying in the City of Blues: Sickle Cell Anemia and the Politics of Race and Health spoke of pain and politics, the shifts, the battlegrounds, the perceptions (some very similar to today), bigotry, ethics, culture and welfare. As he worked his way through his presentation, it became evident to me that the history of Americans’ perceptions of pain and its treatment is a pendulum swinging back and forth like a Grandfather Clock. 

The disparities of pain care are not new. Dr. Bonica, known in the 70's as the father of pain medicine because of his integrative approaches, kept a diary of 100 interviews of pain care providers. What he found was everyone had their own theories. As decades roll on, the pendulum shifts from social rights such as disability, relinquishment of those rights, restoration of those rights, medical to legal, hateful, and almost lunatic accounts of pain, and back again. Pain perceptions evolved from medical assessment to becoming a political resting post of right vs. left (ethical vs. bigoted, not necessarily in that order) to entering the realm of legalities. History should be a teaching lesson, but as someone said in the closing remarks, if you asked 100 pain physicians today how to treat pain, you would still get 100 different answers. We have work to do.

Many things were discussed including access to prescriptions. Challenges include, refusal to fill, long commutes to a pharmacy that can and will, lack of patient funds to pay out of pocket for medications or required drug screening because insurance will not reimburse, and more. According to Dr. Foley, there is no evidence that decreasing opioid prescriptions, lowering doses, or the implementation of drug monitoring programs have any effect on opioid overdose or misuse. So what are our political leaders doing to prove their case for continuing to implement costly programs that have no evidence they work? As Bob Twillman, PhD put it, why would we keep doing the same thing and expect different results? We hear repeatedly how costly pain is to America, but exactly who is driving these costs up, and to what end? 

Dr. Twillman says addiction rates have not changed and he asks, “Will decreasing the number of opioid prescriptions written correlate with a decreased number of patients in pain?” Anyone with common sense knows the answer to that question. So, I ask, "Why are our politicians and governing agencies making such an absurd plan?" We were reminded that we have an election coming up. Maybe we should all think about these things and share our stories with our political figures as suggested by Katie Horton, JD, RN, MPH. She says we should challenge our representatives on why they support programs that are not curbing drug abuse, deaths, or improving patient pain care. For more information on policies, legislation and regulations check out SPPAN, State Pain Policy Networks, and please read and act on my blog:  

We learned from Dr. Richard Payne that the science of epigenetics (studying genetic outcomes of nature/nurture and the effect on DNA expression) could be a potential biomarker for chronic pain. 

As suggested by Dr. Richard Payne and Melissa Robinson maybe we should encourage our congressional representatives to explore the ethnic, racial, social, and behavioral influences on the treatment of chronic pain. Maybe we should research how to treat pain with patient centered goals, not political agendas. We need our physicians to join us in the plight for patient centered care and fight for their right to do so. Both Dr. Payne and Myra Christopher helped draft the IOM report, “Relieving Pain in America.”and they urge us to comment on the National Pain Strategy report that has resulted from the efforts of many, including the PAINSproject. You can read more on this on my blog: 

Make a Public Comment on the National Pain Strategy by Celeste Cooper (The deadline is in days, don't wait.) (Addendum, Public comments closed May 20, 2015)

Our psychosocial and basic needs are not being met. When our priorities are shelter and food,  our pain care takes a back seat, but it shouldn't have to. We must address these issues as the human thing to do, as an ethical obligation to ensure everyone has access to pain care. 

Dr. Lynn Webster, past president of the American Academy of Pain Medicine and author of The Painful Truth, has produced an award-winning documentary (self-funded), with the same name that will air on public television this fall. The documentary covers the spectrum of pain care, and as he says, “The art is in the story.” He hopes the movie “Cake” (love it or hate it) will affect the dialogue on chronic pain the way the Philadelphia Story paved the way for AIDS awareness. As Dr. Webster says, tapping into our emotions is the driving force for change, not science. This is evidenced by the effect media coverage on “The Politics of Pain.” His documentary approaches the right side of pain, the Painful Truth. Watch for its announcement. I know I will.

Trailer for "The Painful Truth"

Conclusion

I have the extreme pleasure and opportunity to know people who are fighting for truth, justice, dignity, social conscious, and treatment for each of us living with chronic pain. I met with Dr. Bob Twillman, Dr. Lynn Webster, Kim Kimminnau, Ann Corley, Orvie Prewitt, my fellow patient leaders at the Relieving Pain in Kansas City, and so many others. I am perpetually energized by these positive people with a common goal to change the way pain is perceived, judged, and treated. 

What Can You Do?

Feel the empowerment of being a change agent by joining a cause that will make a difference for millions of Americans who suffer daily with pain. 

• See what the Center for Practical Bioethics is doing, here.  
• Join the PAINS Project, here. 

About the Speakers

Marc Hahn, DO 

Myra Christopher 

Keith Wailoo, PhD 

Kathleen M Foley, MD 

Bob Twillman, PhD  

Katie Horton, RN, MPH, JD 

Janice Lynch Schuster, et al. Representing people who live with chronic pain

Richard Payne, MD 

Melissa Robinson 

Lynn Webster, MD   

John Carney, MEd 

Bruce Dubin, DO, JD

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

The symposium "Patients as Teachers," "Clinicians as Learners," a synopsis by Celeste Cooper

Center for Practical Bioethics
Patients as Teachers
Clinicians as Learners
April 25, 2014

Let me start by saying that this was a day packed with important, ethical, and usable information. The Center for Practical Bioethics, the organization that put on this symposium in honor of one of their benefactors, Joan Berkley, presented a program that Joan Berkley would be proud to represent.

There was a powerhouse of information offered by people with passion and compassion. Following is what "I" took away from this symposium.

Practicing physicians, bioethicists, researchers, educators, professors, journalists, hospital administrators, psych-ologists and patients, yes patients, took the podium or sat on a panel. You will find it interesting to know that some of the presenters wore two hats, that of professional and patient and everyone was willing to field questions. The media was there in full force too. I apologize for not remembering the names of who said what, but suffice it to say, everything that everyone shared was important and thought provoking.

Rethinking the Paradigm (the model)

"Patient" vs. "Person experiencing illness"

The learning health care system

We started the day discussing the importance of a LEARNING health care system by asking questions like, are clinicians serving and promoting well-being? What are the insights on scientific evidence and are they capturing the real meaning of patient outcome?

Rethinking the Paradigm

"Healthcare system" vs. "Learning healthcare system"

We heard about society's investment, particularly important because of political and legal influences on medicine. We know people make mistakes and so do healthcare systems, but how can we improve if no one admits it? I ask, should we be so caught up, all of us, in the legal implications of mistakes to the point of defending them instead of learning from them? What is the incentive for a "learning" healthcare system? Can we see our way clear to think of healthcare delivery as a human interaction between patient and provider? Shouldn't "people with illness" be more than blobs of cellular mass that accumulate in medical care waiting rooms?

           

We were provoked to think of questions about how we can transform the present model by identifying incentives, improving communication, and understanding moral imperatives to do something. We learned about ways to do this, very specific ways to do this, and all agreed that it begins with the patient, with our community, our physicians, our learning institutions, and a shift in our present way of thinking about healthcare. Being a change agent involves everyone.

Societal impact, patient priorities, and outcome

Chronic pain and illness has an impact on society, there is no doubt about that, but the impact pain and illness has is not limited. It affects patients, those who treat us, and those who provide the means for treatment. Everyone has a stake in the process. One way we can affect healthcare for the better is to have research and data collection that is not based on political, personal, or corporation gain. Instead, it should focus on patient outcome. When patients do better, society also reaps the benefits.

Rethinking the Paradigm

"Empirical Research  vs. Data Collection"

Improved delivery of care should equate with improved patient outcome. Novel idea, the patient improves and healthcare consumption declines. Our current system has every aspect of healthcare delivery circling the drain. The reasons are multi-factorial so there is no room or time for placing blame. We must accept what it is and move forward by creating incentives that will affect necessary change.  

Our means of data collection in the U.S. is poor due to political agendas and fear of legal implications. We can fix this if we are able to collect data that prioritizes patient outcome and provides follow up for everyone involved. Study participants want to know the results of studies; this could be a huge incentive in getting us to participate.

As an RN with a clinical background in emergency nursing, we treated patients, we stabilized them, but we rarely knew if the patient was able to return to their previous level of functioning. Where is the data on this? How can we assess information on success or failure of interventions if the data on long-term outcomes is not available? This type of informatics is a huge undertaking but it is possible, and there are people willing to help. Think of the database we could learn from if we weren't shackled by the small sampling we currently have. Every chronic pain patient or patient with a chronic illness knows medication side effects and medical devise failure. We also know that true results are born from a vastly larger sampling, the public. Even then, not all reactions are reported and if they aren't reported, they didn't happen. It is as simple and as complicated as that. This doesn't mean there still isn't a need for empirical studies, it only means that we have a great deal of information that isn't being utilized effectively, a sad commentary in lieu of our present technology. As patients, we have a primary role.

I was inspired by bioethicists, representatives from healthcare systems, hospital administrators, physicians, and other clinicians that see it is a moral imperative to look at gaps in our current system.

Rethinking the Paradigm

"Filling the potholes"

Our present system is also mired down with legal and political entanglements regarding privacy. We have seen all the paperwork. Do you feel any better about how your information is shared since these privacy acts were implemented? Do you feel they have improved your outcome? I know I don't. To me it seems like a costly exercise in futility where money could be used more effectively and efficiently. Yes, we need privacy, but I suspect most healthcare providers understand this importance without being told and those who share your information will do it despite any law. How many read every word or understand those pages of paper shoved at us before a physician can legally see us? The same is true for education by a pharmacist on our medication. I know if I had a question, I could always call the pharmacist and get an answer, I don't need to sign a document every time I pick up my prescriptions. Ninety percent of law is the intent and in my opinion, these laws are creating a healthcare cost conundrum. As patients, we can affect change, but we must speak up, give our opinion when the opportunity presents, and be willing to let our data be used for the greater good. There are ways to protect our information and still share it. We have a moral imperative to contact our legislators and let them know exactly what we think. (See helpful links on my website here.)  

The affect of media hype regarding opioids

Journalists, patients, and professors brought up some very good points regarding media hype on opioids and the demise of our country as a whole because of them. Now, peel yourself off the ceiling.

First, both sides of this human factor are not represented equally. The media needs personal stories to publish regarding the good side of pain treatment. We can share our stories and we can encourage our pain doctors to do the same. It needs to be a polarized issue, meaning equal time. People in our society who are not touched by chronic pain don't hear about how opioids improve function. Pharmaceutical companies have deep pockets to pay for press releases and influence the DEA, which makes physicians fearful. Of course, there are always concerns that opioids will fall into the wrong hands, but there should also be concerns that millions of Americans will be left untreated leaving them at a higher risk for suicide. Why should a chronic pain patient have to pick up and move to a state where medical marijuana is legal? The general public doesn't understand that when opioids are administered and followed closely by an educated healthcare professional, the risk of abuse is no more than it would be for alcohol. They don't understand there are many forms of marijuana that relieve pain without causing a euphoric effect. What they should understand is that having pain treated is a basic human right and if in the same position, they would fight for their rights too. We have a basic animal instinct to avoid pain. Why are we letting people with financial agendas brainwash society? Reporters report news; we need to give it to them. One physician in the audience made a statement that stuck with me when discussing the use of opioids to treat "legitimate pain"...

"What is legitimate pain? Isn't all pain legitimate?"

Rethinking the Paradigm

Human experiences

Many shared their human experiences, which provided us with thought provoking, learning opportunities.

Rethinking the Paradigm

"What the doctor says vs. What the patient hears"

Does there come a time when we as patients become weary of being talked at, instead of with, and after a while, do we turn a deaf ear? The answer is yes. Skillful communication is an issue; there are plenty of studies to show why physicians don't communicate better. One of the psychiatrist's speaking offered the suggestion that physicians ask open-ended statements such as, "How is your family?" I am still uncertain if he understood the implications of that question for the person living with chronic pain. If asked, the answer to that question could give the physician an inside look at coping strategies and the support someone living with pain has at home. If we employ good communication skills, maybe it's possible to be the example. There are some tips on my website here. 

Rethinking the Paradigm

"Speaking, using closed-end questions, interrupting 
vs. 

Asking, answering, listening, clarifying"

Facing reality

What we do, what we teach, what we talk about with our loved ones may not be what happens when we are faced with hard realities. I think this is very personal and unique. It doesn't mean we shouldn't have a plan, it only means that we may not hold to our way of thinking until a situation is presented. We have no control over the future. No one knows this better than the bioethicist who was interviewed on live radio (KCUR) during the symposium. To listen to a compelling personal story on end of life decisions by someone who teaches and speaks all over the world on this issue, click here. You will not hear what you think you will hear.

In conclusion

You know I raised my hand quite a lot. I had some questions that were answered before the mike came around to me, which holds true to my belief that if one person has a question, someone else in the audience has the same question. A journalist for the Kansas City Nursing News was there and she interviewed others and me. I was in awe of the degree that people care about these important ethical issues.

If I could have added any final comments, it would have been, "We have been fed, go forth - teach others to fish." Following that analogy, I am doing that here and I hope you will do the same.

People from all walks of healthcare are becoming change agents for finding a new way of delivering care and treating pain. We can be willing partners. (See www.PioneersResearch.org or similar resources in your area). Participation in patient focused research is a privilege that affects not just us as individuals.

It all starts at home and future generations will be affected by our decisions today.

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Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.