Editor’s note: The following is part two of a multi-part series of articles on RELIEF covering the IASP Global Patient Alliance (see part one here, part three here, and part four here). Stay tuned for additional coverage over the coming weeks.
Pain investigators from across the globe shared innovative laboratory research at the 2018 World Congress on Pain, the biennial meeting of the International Association for the Study of Pain (IASP). The hope is that this emerging knowledge will ultimately be translated into new treatments for patients. But there are many challenges in moving laboratory science from the “bench to the bedside,” as the saying goes. And, even when novel treatments work, social, economic, administrative and other barriers may keep those therapies from reaching patients in need.
At the World Congress, held September 12-16 in Boston, IASP hosted two sessions about effective advocacy, where scientists, healthcare providers, and patient advocates came together to discuss the strategies they have used to advocate for change at the local, national, and global levels, to help those living with persistent pain.
The advocacy sessions were just two of a number of gatherings to engage patients at the Congress, all as part of IASP’s Global Patient Alliance (see RELIEF related news coverage of the alliance).
Education and outreach
In the first session, “Effective Advocacy at the Local and National Levels: Learning from the Experts,” one theme was clear: the importance of education and outreach. Daniel Carr, Tufts University School of Medicine, Boston, US, said it was a privilege to convene a panel of advocacy experts who have “been there, done that, and made a difference.”
These experts included journalist and author Judy Foreman, Cambridge, US; Monica Bharel, Massachusetts Department of Public Health, Boston, US; Christine Chambers, Dalhousie University, Halifax, Canada; Friedhelm Sandbrink, Veterans Affairs (VA) Medical Center, Washington DC, US; and Pamela Katz Ressler, Tufts University School of Medicine, Boston, US.
Foreman, the author of “A Nation in Pain” (see book review on the Pain Research Forum and a previous RELIEF interview with Foreman), discussed the need to educate the press about pain, particularly in light of the ongoing opioid crisis.
“The truth is that we have two colliding epidemics—a chronic pain epidemic and an opioid epidemic—and only one, the opioid epidemic, is getting attention. The result of this lopsided reporting is that pain patients are stigmatized and opioids for legitimate use by pain patients become harder to get,” she said. “We need to encourage pain patients to take on the media. A few phone calls to a reporter or producer can be really effective.”
Regarding effective advocacy, Monica Bharel discussed initiatives the Massachusetts Department of Public Health has undertaken to help better educate medical students about chronic pain.
“In 2015, a coalition of our four medical schools came to me and said that when it came to balancing pain management and opioid misuse, they did not feel prepared,” she said. “How powerful that is, to come from the medical students themselves.”
The coalition joined with the Governor’s Medical Education Working Group, which reviewed the literature and spoke with more than 40 pain and addiction experts to come up with ten new core competencies surrounding pain management. Within eight weeks, all four medical schools voluntarily agreed to adopt those competencies into their curricula.
“This is a model that shows we can quickly change the way we educate in response to a public health crisis,” Bharel said.
For her part, Christine Chambers, a pediatric pain psychologist, told the audience that she never intended to be a patient advocate.
“I naively thought doing research was how change happened,” she said. “But in many ways we researchers are always preaching to the choir. I joke that I give the same talk to the same 500 people in different cities around the world.”
But after receiving training in media, publicity, and advocacy, Chambers started using social media to share research evidence with the general public in a conversational way—and she says those efforts have been very well received. These include It Doesn’t Have to Hurt, an initiative that provides parents with strategies they can use to help their children with needle pain, as well Making Cancer Less Painful for Kids, whose goal is to improve parents’ awareness and use of information about cancer pain assessment and management in children.
“It’s about transforming evidence into influence,” she said. “And when we can create conversations, and engage patients, we can reach new people and form new alliances that can help us find new opportunities to help our patients.”
Friedhelm Sandbrink discussed how the Veterans Affairs (VA) Medical Center in Washington DC is working towards system change by creating integrated pain management treatment programs, which take a multidisciplinary approach, including physical, behavioral, and alternative treatments.
“In response to the opioid crisis and pain crisis, the VA is in the process of establishing interdisciplinary pain management teams at all facilities to support primary care in delivering high quality pain care system-wide,” he said.
He discussed how he and his colleagues are developing a new program to promote patient-aligned care teams. These are the VA’s primary care provider teams, which pursue a patient-centered approach that generally integrates mental health into the care of patients. Such teams do not only treat chronic pain, but also the mental health conditions that often accompany pain in the veteran population.
Finally, Pamela Katz Ressler, of Tufts University School of Medicine’s Pain Research, Education & Policy (PREP) program, discussed her work trying to amplify the voices of patients living with persistent pain through tools of connection.
“So often, people living with chronic pain are isolated in a way we don’t understand,” she says. She said that online forums, communities, and blogs offer opportunities to help these patients connect and communicate the experience of living with chronic pain.
“We see that these connections help give patients more agency over their health,” Ressler said to the workshop participants. “So my challenge to all of you is, how we can design an environment of connection where we all—even those living with chronic pain—feel like we’re part of the world again?”
In the second advocacy session, “Advocating for Pain Relief Worldwide: Best Practices from Around the Globe,” advocates from Southeast Asia, Europe, the United Kingdom, and the United States discussed ways they have facilitated positive change in healthcare policies to help those living with chronic pain.
Rolf-Detlef Treede, Heidelberg University, Mannheim, Germany, and a past president of IASP, discussed IASP’s advocacy efforts with the World Health Organization (WHO). Here, the goal is to improve the classification of chronic pain in WHO’s International Classification of Diseases (ICD-11), in order to improve pain management. Treede headed an international task force of pain experts created by IASP to advance this effort.
“Researchers are always advocating for themselves to receive funding for research,” he said. “Everything starts with research because we need to have an understanding. But then we need to find a way to spread that understanding to policy makers. IASP’s vision of working together for pain relief throughout the world includes the translation of research findings into patient care. The upcoming 11th edition of WHO’s International Classification of Diseases offers an unprecedented opportunity to guide patients with a broad range of chronic pain problems to adequate management by an innovative coding system for the underlying diagnoses.”
He discussed how the new chronic pain classification for ICD-11 tries to put aside the debate about whether pain is a disease or a symptom in order to take a more practical approach to pain management. The classification recognizes not only the severity of pain, but also pain-related disability and distress. Treede believes that, if the changes are accepted, this will have great benefit for pain research and patients.
“The WHO has not voted on this construct yet,” he said. “It is important that you talk to your colleagues, and to politicians, start an ICD-11 education program in your country, and join with IASP in promoting this new classification of chronic pain around the world.”
Mary Cardosa, Hospital Selayang, Selangor, Malaysia, presented the efforts of the Association of South-East Asian Pain Societies to advocate for better pain management across the region.
“We have six chapters now and we offer training and education, share resources, and help each other in whatever we can, to help improve pain management,” she said.
Representing the United States, American Pain Society (APS) president William Maixner, Duke University, Durham, US, offered his insights into advocating for increased pain research funding from the US National Institutes of Health. He discussed the APS’s A Pain Research Agenda for the 21st Century and how that endeavor is helping to address fundamental research gaps in the understanding of chronic pain and the lack of evidence-based treatment alternatives to opioid medications, and how addressing these issues can help the United States better tackle both the chronic pain and opioid epidemics.
Penney Cowan, founder and chief executive officer of the American Chronic Pain Association, a Rocklin, California-based peer support and education organization for those living with persistent pain, highlighted the importance of integrating the patient voice into all policy efforts.
“As we’re developing these world-wide pain self-management programs, it’s so important to include the person with pain from the beginning,” she said. “Pain management requires a team effort. No one knows better what it’s like to live with chronic pain than those who actually do.”
That’s one reason for the Societal Impact of Pain (SIP) platform in Europe, created in 2009 as a joint initiative of the European Pain Federation EFIC and the pharmaceutical company Grünenthal GmbH to raise awareness of pain, exchange information and share best practices, and develop policies to improve pain care in Europe. Thomas Tölle, member-at-large of the EFIC executive board; Bart Morlion, president of EFIC; Marian Harkin, a member of the European Parliament from Ireland; and Paul Cameron, of the Scottish Government and NHS, Scotland, discussed this initiative, which is working to ensure access to adequate pain education and management.
“Christine Chambers talked about moving from evidence to influence,” said Tölle. “We must take that seriously and make sure the right information is transferred to healthcare organizations that can support it.”
He said that identifying national allies and the target audience, and training pain relief advocates, can help those healthcare organizations better inform the development of laws and policies that affect patients who live with persistent pain. Harkin agreed.
“Pain has a huge impact on the economy in every country, as well as for the individuals themselves,” she said. “With an aging population, the numbers of those who live with chronic pain will increase and they will look to government to make sure we are putting policies and programs in place that will allow people to live their lives with dignity.”
Cowan told RELIEF that both sessions showed that advocacy efforts can and do work.
“Pain is invisible. And when something is invisible, it’s hard to believe it,” she said. “But as you see with these efforts, when you can make pain more visible, you really do have an opportunity to make some real changes. It makes me very optimistic.”
Kayt Sukel is a freelance writer based outside Houston, Texas.
Editor’s note: RELIEF’s news team is editorially independent of its publisher, IASP. All editorial decisions about RELIEF’s coverage of IASP activities are made solely by the RELIEF editors, and all content is provided by professional freelance science journalists. RELIEF is also editorially independent of the Global Patient Alliance’s sponsor, Teva Pharmaceuticals.