A Step Toward a Cultural Transformation in the Way Pain is Perceived, Judged and Treated
The following blog post is the executive summary of the June 29-30, 2015, PAINS Collaborators Meeting in Washington, DC, held in response to Department of Health and Human Services’ publication of the National Pain Strategy Report.
In anticipation of publication of the National Pain Strategy (NPS) Report, in June 2015 the Pain Action Alliance to Implement a National Strategy (PAINS), a coalition of national leaders and organizations committed to advancing the sixteen recommendations made in the Institutes of Medicine’s report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research, convened a Collaborators Conference in Washington, DC. The purpose of the meeting was to discern opportunities and challenges to implementation of the report, to build enthusiasm for it and promote collaboration among attendees in order to move the NPS Report from a vision to a reality. More than 100 prominent leaders from professional societies, academic institutions, federal agencies, patient advocacy groups, and policy organizations met to review the NPS Report and discuss each of its six sections.
In April 2015, the NPS Report underwent preliminary review by multiple federal agencies and was then posted in the Federal Register for public commentary. In opening remarks, Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS), told attendees that more than 770 responses were received and the plan is expected to be released in the late summer/early fall. Expectations for it are high. The report’s vision states, “If the objectives of the National Pain Strategy are achieved, the nation would see a decrease in prevalence across the continuum of pain, from acute, to chronic, to high-impact chronic pain, and across the life span from pediatric through geriatric populations, to end of life, which would reduce the burden of pain for individuals, families, and society as a whole. Americans experiencing pain — across this broad continuum — would have timely access to a care system that meets their bio-psychosocial needs and takes into account individual preferences, risks, and social contexts. In other words, they would receive patient-centered care.”
PAINS surveyed participants prior to the meeting and found that overall, the NPS Report was well received by respondents, and stakeholders expressed appreciation and support for it. One respondent said about the report, “It presents a rare opportunity for cultural change with across-the-board goals and strategies.” The three foci in which attendees were most interested were: professional education and training (72.7%), public education and communication (69.7%) and prevention and care (57.6%).
However, concerns were also expressed about the lack of specificity and accountability, the absence of a timeline, and the fact that there has been no appropriation of funding designated for implementation of the plan.
• The need for research, including population, basic science, clinical translational, comparative effectiveness, and quality improvement were all discussed. Greg Terman, member of the NPS Oversight Committee, said that with the help of others at CDC and NIH, a set of pain questions are being developed to be included in the National Health Interview Survey.
• The importance of addressing historic disparities in health and healthcare was recognized as critical to successful implementation of the report in that they permeate the entire report. Nadine Gracia, Deputy Assistant secretary for Minority Health, cautioned that “culturally and linguistically appropriate language” must be incorporated in education and communication efforts called for in the report.
• Learning from efforts of the Department of Defense to improve pain care for veterans that have preceded the NPS Report was promoted by Dr. Chester “Trip” Buckenmaier in his report on Care and Prevention. In particular, he encouraged consideration of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR), the Patient Reported Outcome Measurement Improvement Survey (PROMIS) and Computer Adaptive Testing (CAT).
• On behalf of the Service Delivery and Reimbursement Workgroup, Marianne Udow-Phillips cautioned attendees not “to think that we are going to abandon fee-for-service” because she said large self-insured employers like it. Everyone recognized improved reimbursement as a keystone issue. Udow-Phillips encouraged the audience by saying that there is interest among payers in programs that improve quality and save money. She called for small pilot programs to demonstrate the feasibility and efficacy of comprehensive pain care, including exploration of “fee-for-service with incentives.”
• Although professional education and training is recognized as critically important, Dr. Mac Gallagher, reporting on behalf of the Professional Education and Training Section, said, “We can’t wait for the medical schools and licensure groups to change.” Attendees were enthusiastic about and supportive of the NIH Pain Consortium’s program to develop Centers of Excellence in Pain Education. However, Dr. Dave Davis, Senior Director of Continuing Education and Improvement at the Association of American Medical Colleges, agreed with Gallagher and encouraged more focus on continuing medical education for practicing clinicians, including biomedical, behavioral and complementary therapies. He also pointed to the importance of IEPs (inter-professional education programs).
• Penney Cowan, co-chair of the Public Education and Communication Workgroup, reported that two public education campaigns were recommended by the group. The priority campaign being an extensive public awareness campaign about chronic pain and the secondary campaign being on safe medication use by patients. Four “core messages” developed by the Chronic Pain Advocacy Task Force (CPATF), a coalition of 17 consumer advocacy organizations, were presented. The messages clearly resonated with meeting attendees and became a major focus of actions following the conference.
Key to the success of the meeting was the involvement of people living with chronic pain – a highly successful environmental lawyer injured in a bicycling accident fifteen years ago, a professor of bioethics and public health born with sickle cell disease, and Cindy Steinberg, a person who experienced a “crushing accident” more than a decade ago who has become a self-educated policy wonk and now dedicates her life advocating for better care for the 100 million Americans who live with chronic pain.
Ms. Steinberg was the closing keynote speaker for PAINS Collaborators Meeting. In an impassioned appeal, she called for PAINS and all those present to do four things:
1) Endorse the four core messages developed by CPATF.
2) Develop op-eds in support of the NPS Report at the time of its release.
3) Advocate for peer reviewed articles about the Report.
4) Work together to develop a national communication strategy in time for Pain Awareness Month in September.
Based on a robust evaluation plan, PAINS believes the Collaborators Meeting achieved the goals that had been set for it. (Perceptions and opinions of attendees regarding the meeting are included entirely as received.) One reason PAINS invested significant resources into evaluation was to assess attendees’ views about the role of PAINS in implementation of the National Pain Strategy Report. Based on responses to a meeting with key national leaders immediately following the conference, responses to a post-meeting survey, emails received from attendees, and a report from the meeting facilitator, PAINS believes that its greatest contribution is to continue to serve in the role of neutral convener and facilitator of collaboration among the many groups committed to advancing the NPS Report.
The conclusion of the report states the obvious, “A cultural transformation in the way pain is perceived, judged and treated” will require almost unimaginable resources, numbers of organizations and committed individuals, political will, and changes in attitudes. However, the dialogue, discourse and enthusiasm at the PAINS Collaborators Meeting encouraged those who convened and planned it and gave hope to all those present that the U.S. is at the precipice of a cultural shift in the way chronic pain is managed. The report’s vision can become reality, but there is much to be done. There is no time to rest on one’s laurels. As Henry Ford once said, “Coming together is a beginning, staying together is progress and working together is success.”
BACKGROUND
In anticipation of publication of the National Pain Strategy (NPS) Report, in June 2015 the Pain Action Alliance to Implement a National Strategy (PAINS), a coalition of national leaders and organizations committed to advancing the sixteen recommendations made in the Institutes of Medicine’s report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research, convened a Collaborators Conference in Washington, DC. The purpose of the meeting was to discern opportunities and challenges to implementation of the report, to build enthusiasm for it and promote collaboration among attendees in order to move the NPS Report from a vision to a reality. More than 100 prominent leaders from professional societies, academic institutions, federal agencies, patient advocacy groups, and policy organizations met to review the NPS Report and discuss each of its six sections.
In April 2015, the NPS Report underwent preliminary review by multiple federal agencies and was then posted in the Federal Register for public commentary. In opening remarks, Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS), told attendees that more than 770 responses were received and the plan is expected to be released in the late summer/early fall. Expectations for it are high. The report’s vision states, “If the objectives of the National Pain Strategy are achieved, the nation would see a decrease in prevalence across the continuum of pain, from acute, to chronic, to high-impact chronic pain, and across the life span from pediatric through geriatric populations, to end of life, which would reduce the burden of pain for individuals, families, and society as a whole. Americans experiencing pain — across this broad continuum — would have timely access to a care system that meets their bio-psychosocial needs and takes into account individual preferences, risks, and social contexts. In other words, they would receive patient-centered care.”
PAINS surveyed participants prior to the meeting and found that overall, the NPS Report was well received by respondents, and stakeholders expressed appreciation and support for it. One respondent said about the report, “It presents a rare opportunity for cultural change with across-the-board goals and strategies.” The three foci in which attendees were most interested were: professional education and training (72.7%), public education and communication (69.7%) and prevention and care (57.6%).
However, concerns were also expressed about the lack of specificity and accountability, the absence of a timeline, and the fact that there has been no appropriation of funding designated for implementation of the plan.
CALL FOR SUPPORT
In the opening keynote address of the two-day conference, Dr. Sean Mackey, co-chair of the NPS Report Oversight committee, said, “Eighty incredibly dedicated national experts covering a wide range of the bio-psychosocial aspects of pain – including expertise from clinical and public health, legal, ethical and payment, including both traditional and complementary medicine – volunteered their time to develop the plan.” He introduced the concept of “high-impact chronic pain,” which the NPS Report defines as “pain associated with substantial restriction of participation in work, social, and self-care activities for six months or more.” Mackey said that doing so was meant to address challenges there have been to the IOM report’s claim that “at least 100 million Americans live with chronic pain…. and that 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.” He said, “The NPS is a great document. It is not a perfect document.” He urged those present and others committed to transforming pain care in America not to pick the document apart, but to support it in its entirety. He also argued for the development of clear messaging explaining what the NPS Report is and what it is not. Compellingly, he asked all those present to speak with one voice and not let the perfect be the enemy of the good.OBSERVATIONS FROM SECTIONS OF THE REPORT
In brief reports, members of the six NPS Workgroups presented highlights of the section of the report they worked on, shared personal observations and then engaged with all those present in robust conversation. Key elements of those included:• The need for research, including population, basic science, clinical translational, comparative effectiveness, and quality improvement were all discussed. Greg Terman, member of the NPS Oversight Committee, said that with the help of others at CDC and NIH, a set of pain questions are being developed to be included in the National Health Interview Survey.
• The importance of addressing historic disparities in health and healthcare was recognized as critical to successful implementation of the report in that they permeate the entire report. Nadine Gracia, Deputy Assistant secretary for Minority Health, cautioned that “culturally and linguistically appropriate language” must be incorporated in education and communication efforts called for in the report.
• Learning from efforts of the Department of Defense to improve pain care for veterans that have preceded the NPS Report was promoted by Dr. Chester “Trip” Buckenmaier in his report on Care and Prevention. In particular, he encouraged consideration of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR), the Patient Reported Outcome Measurement Improvement Survey (PROMIS) and Computer Adaptive Testing (CAT).
• On behalf of the Service Delivery and Reimbursement Workgroup, Marianne Udow-Phillips cautioned attendees not “to think that we are going to abandon fee-for-service” because she said large self-insured employers like it. Everyone recognized improved reimbursement as a keystone issue. Udow-Phillips encouraged the audience by saying that there is interest among payers in programs that improve quality and save money. She called for small pilot programs to demonstrate the feasibility and efficacy of comprehensive pain care, including exploration of “fee-for-service with incentives.”
• Although professional education and training is recognized as critically important, Dr. Mac Gallagher, reporting on behalf of the Professional Education and Training Section, said, “We can’t wait for the medical schools and licensure groups to change.” Attendees were enthusiastic about and supportive of the NIH Pain Consortium’s program to develop Centers of Excellence in Pain Education. However, Dr. Dave Davis, Senior Director of Continuing Education and Improvement at the Association of American Medical Colleges, agreed with Gallagher and encouraged more focus on continuing medical education for practicing clinicians, including biomedical, behavioral and complementary therapies. He also pointed to the importance of IEPs (inter-professional education programs).
• Penney Cowan, co-chair of the Public Education and Communication Workgroup, reported that two public education campaigns were recommended by the group. The priority campaign being an extensive public awareness campaign about chronic pain and the secondary campaign being on safe medication use by patients. Four “core messages” developed by the Chronic Pain Advocacy Task Force (CPATF), a coalition of 17 consumer advocacy organizations, were presented. The messages clearly resonated with meeting attendees and became a major focus of actions following the conference.
PUBLIC HEALTH, POLITICS AND ADDICTION ADVOCACY PERSPECTIVES
Outside experts provided input and perspective for consideration from public health, politics, and addiction advocacy. Dr. Georges Benjamin, Executive Director of the American Public Health Association, encouraged the use of patient narratives about those living with extreme chronic pain. He also encouraged gaining more clarity about the problem and reframing discussion using more of a public health framework. Dr. Keith Wailoo, historian and author of Pain: A Political History, shared how concerns about disability, physician assisted suicide, the “War on Drugs,” and dramatic increases in addiction to prescription pain medications have shaped pain policy over the last seven decades and impacted the lives of those living with chronic pain. He also discussed how the so-called “red state vs. blue state” worldview negatively impacts those who live with chronic pain and other diseases, including addiction. Dr. Jeff Levi, CEO of Trust for America’s Health, began his presentation by saying, “All politics, perhaps especially health politics, is personal.” He said that “the pain community starts with the individual in pain and wants to find the best solutions for that individual…. The substance abuse prevention world starts with preventing addiction and looks in particular to find structural interventions that make it harder for someone to become addicted.” Dr. Levi, as had others throughout the day, called for finding common ground and suggested specific strategies for doing so, with one of those strategies being to focus on harm reduction.ADVANCING THE REPORT’S STRATEGIES
One the second day of the conference, participants broke out into groups focused on each section of the report and then shared thoughts and ideas about how to advance the strategies and objectives in the NPS Report. Those reports are incorporated in the full report in their entirety.Key to the success of the meeting was the involvement of people living with chronic pain – a highly successful environmental lawyer injured in a bicycling accident fifteen years ago, a professor of bioethics and public health born with sickle cell disease, and Cindy Steinberg, a person who experienced a “crushing accident” more than a decade ago who has become a self-educated policy wonk and now dedicates her life advocating for better care for the 100 million Americans who live with chronic pain.
Ms. Steinberg was the closing keynote speaker for PAINS Collaborators Meeting. In an impassioned appeal, she called for PAINS and all those present to do four things:
1) Endorse the four core messages developed by CPATF.
2) Develop op-eds in support of the NPS Report at the time of its release.
3) Advocate for peer reviewed articles about the Report.
4) Work together to develop a national communication strategy in time for Pain Awareness Month in September.
Based on a robust evaluation plan, PAINS believes the Collaborators Meeting achieved the goals that had been set for it. (Perceptions and opinions of attendees regarding the meeting are included entirely as received.) One reason PAINS invested significant resources into evaluation was to assess attendees’ views about the role of PAINS in implementation of the National Pain Strategy Report. Based on responses to a meeting with key national leaders immediately following the conference, responses to a post-meeting survey, emails received from attendees, and a report from the meeting facilitator, PAINS believes that its greatest contribution is to continue to serve in the role of neutral convener and facilitator of collaboration among the many groups committed to advancing the NPS Report.
The conclusion of the report states the obvious, “A cultural transformation in the way pain is perceived, judged and treated” will require almost unimaginable resources, numbers of organizations and committed individuals, political will, and changes in attitudes. However, the dialogue, discourse and enthusiasm at the PAINS Collaborators Meeting encouraged those who convened and planned it and gave hope to all those present that the U.S. is at the precipice of a cultural shift in the way chronic pain is managed. The report’s vision can become reality, but there is much to be done. There is no time to rest on one’s laurels. As Henry Ford once said, “Coming together is a beginning, staying together is progress and working together is success.”
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