by Sean Mackey – Presented at the NPS Collaborators Meeting Convened by PAINS – June 29, 2015
Good morning. Thank you PAINS and Myra for the invitation.
I was asked by PAINS to share with you some of my personal reflections on the process and our needs to successfully in moving forward – and with the time available, I will focus on messaging. In doing so, allow me to state that I have no relevant conflicts of interest. In framing my views and reflections of the NPS, allow me to provide a brief introduction.
I am a Professor and Chief of the Stanford Division of Pain Medicine. I oversee a comprehensive interdisciplinary academic pain center where we deliver care to thousands of people suffering with pain and I am a pain physician who cares for those in pain. I direct an NIH funded neuroscience based research group at Stanford where our mission is “To Predict, Prevent and Alleviate Pain.” I was on the Institute of Medicine’s Committee that wrote the Relieving Pain in America report. And I am the son of two parents who suffer from chronic pain. One receives care in the medical system from both primary care and pain specialists. The other is quite stubborn, who self-manages his pain and refuses to get professional help or even talk with me about it. And did I mention he is stubborn? With Dr. Linda Porter of the NIH, I had the honor of Chairing the Oversight Panel for the National Pain Strategy Task Force as well as the Chairing the Prevention and Care WG with Dr. Dan Carr.
The IOM pain report called for a cultural transformation in how pain is perceived and judged both by people with pain and those who care for them. The overarching goal of this transformation is to better understand pain of all types and to improve prevention, assessment and treatment of pain. Whereas the IOM report was a blueprint – a 30,000 foot view of where we are and need to go – the NPS was designed to be a document of action. A specific, tactical ground level view to guide our actions in delivering the cultural transformation called for in the IOM Pain Report.
In developing the NPS, we brought together 80 incredibly dedicated national experts covering a wide range of the biopsychosocial aspects of pain – including expertise from clinical and public health, legal, ethical, and payment, including both traditional and complementary medicine. These experts volunteered their time to develop a strategic plan whose whole is much greater than the sum of its parts.
We developed 6 working groups (WGs) to align with the IOM findings and recommendations. Linda has described these WGs. I will share that we designed the WGs and strategic goals to not stand alone – but rather for there to be cross-fertilization of ideas and concepts. For instance, while Disparities is a separate WG, we wanted all WGs to recognize the importance of disparities and provide solutions.
We introduced and solidified important concepts. For instance, we pushed forward the concept of “high impact chronic pain which is that pain associated with substantial restriction of participation in work, social, and self-care activities for six months or more.” This was meant, in small part, to address some of the challenges we had in the IOM report in communicating the 100 million Americans with chronic pain – an astoundingly large number. That number is accurate. That number also represents the range of chronic pain from those with minor impact and maintain day-to-day activities, to those catastrophically impacted. There is a clear need to better understand the numbers of people with high-impact chronic pain, how to provide them with the best care to avoid both under- and over-treatment, and to identify those at risk for developing high-impact chronic pain after injury or surgery.
For successful implementation of the NPS, we need to develop a clear set of key messaging and we need to speak with one voice. We have 18 strategic goals covering a broad range of pain initiatives. 18 is a large number of messages to ask the American public and our policymakers to digest. We want to learn from and avoid the challenges faced by those trying to explain similar broad initiatives. A most recent example being the Affordable Care Act and its incredible complexity. Therefore we need to simplify the messaging and branding. This will require developing a core set of messages we can all deliver to the public, media and policymakers. We then need to then speak that with one voice.
We need to speak with one voice. We need to message what the NPS is – and is not. For example, while the vast majority of people I talk with are incredibly positive about the NPS, I’ve heard some concerns that, for instance, we didn’t have goals calling for more basic and translational research – or even an National Institute of Pain. Very simply, it wasn’t the charge of the NPS to address those laudable goals and we need to make that clear.
We need to speak with one voice. It is clear that there are parts of the NPS that will resonate more with one group than another. Fine. But let’s all support the entire plan. Last Year, while President of the American Academy of Pain Medicine, I committed that our Academy would stand behind all 18 strategic goals. We would not pick and choose.
Let us speak with one voice. The NPS is a great document. It is not a perfect document. I have heard from a small number of vocal people their disappointed that the NPS wasn’t creative or inventive enough. My response? Isn’t that wonderful!! The NPS was not designed to be creative and inventive. Rather, the NPS was designed to take what we already know needs to be done, what we know works – and propose specific, tactical plans for implementation with broad and noncontroversial support. To illustrate the benefit of this approach, during the public commentary period, I generated a letter of support for the NPS addressed to Secretary Burwell. I brought together over 50 national professional medical and advocacy organizations to sign on to this letter. Astonishingly, the American Medical Association was one of the fastest responders. I asked them afterwards. They agreed that usually requests like this take a protracted period of time to work through their system. In this case they said we made it easy for them because the NPS is noncontroversial and clearly important. It is motherhood and apple pie. How can you not support it? Let’s speak with one voice and not let perfect be the enemy of great.
Let’s speak with one voice. I implore us all to be as inclusive as possible and resist the urge to control the messaging or processes. I appreciate that PAINS is convening this event. I am pleased you are all here to participate. We need to have more of these events. Events sponsored by organizations everywhere. And we need to find a way to come together such that each organization can maintain their autonomy while contributing to the shared goals of the NPS. Michael Leavitt, former HHS Secretary, writes in his excellent book, Finding Allies, Building Alliances that the most successful group collaborations come about through a sense of “common pain.” Now while he was referring to a different types of pain, his message remains clear. Our “common pain” relates to the challenges we all face in obtaining meaningful data about pain, optimal delivery of pain assessment, prevention and care, and education of the public and our professionals.
Let’s all collaborate around our “common pain” and speak with one voice.
I have been honored to serve with the 80 superb members of the NPS Task Force. We are not done. We must all actively engage in the necessary steps to implement the NPS. We must work closely with HHS to advocate leadership from their Department. To ask HHS to lead in tasking the relevant stakeholders with implementation of the strategic goals, establishing accountability for progress, and identification and allocation of resources to advance the Strategy. Importantly, this will also require collaboration among healthcare providers, with persons suffering with pain, professional societies and advocacy groups, researchers, employers, payers, elected officials and the media – all on a scale we have not done before. To be successful, we must all be part of the dialogue and the solution, and speak with one voice. Successful implementation of these strategic goals will create the cultural transformation in pain prevention, care, and education called for in the IOM Pain Report and called for by the American public. I am confident we are up to the challenge. Thank you.