Building a Global Patient Alliance

At the 2018 World Congress on Pain, the International Association for the Study of Pain kicked off a worldwide initiative to incorporate the patient voice into pain research and care.

Editor’s note: The following is part one of a multi-part series of articles on RELIEF covering the IASP Global Patient Alliance (see part 2 here). Stay tuned for additional coverage over the coming weeks. 

The stated mission of the International Association for the Study of Pain (IASP), a non-profit, professional scientific association, is to bring together “scientists, clinicians, health-care providers, and policymakers to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.” But when Lars Arendt-Nielsen, a pain researcher at Aalborg University in Denmark, was elected President of IASP, he realized that the voice of one key stakeholder was missing: that of the patient.

“It’s been on my agenda to improve our connections with patients. They can give us so much input and help us guide our strategies,” he said. “But we want to make sure we are expanding this to a global level. IASP is a global organization and we need to make sure that voices from different countries are heard as we move forward.”

To pursue that agenda, IASP hosted the kick-off meeting of its Global Patient Alliance, an initiative whose goal is to create a blueprint for how IASP can better integrate the patient voice to inform pain research and its translation into new interventions to treat pain. The kick-off, which included members of patient advocacy groups from the United States, Canada, Pakistan, Poland, the United Kingdom and Finland, took place September 12 at the 2018 IASP World Congress on Pain in Boston, US.

Joletta Belton, co-founder and executive director of the Endless Possibilities Initiative, a Fraser, Colorado-based non-profit organization with the mission of improving patient access to science-based information about pain, said she was excited to be asked to participate in the kick-off.

“The IASP Global Patient Alliance is a wonderful opportunity to bring together patient advocacy groups from around the world and determine how we can leverage our collective resources to make a difference for patients worldwide,” she said after the initial meeting. “We want to leverage our resources, as well as those of IASP and the research community, to bridge the gap between pioneering pain research and patients who are living every day with chronic pain conditions.”

The kick-off was just one of a number of gatherings in Boston to engage patients at the Congress, all as part of the Global Patient Alliance.

The development of the Global Patient Alliance is supported by an educational grant from Teva Pharmaceuticals.

The patient voice
To help guide the initial discussions of the Global Patient Alliance’s plans, IASP first presented the results of a recent survey it gave to patient advocacy organizations throughout the world that asked about their services and needs. The survey revealed that some of the highest priority issues these groups are facing are the need to provide more training to healthcare providers about pain management, to raise patient awareness about what scientists are learning about pain, and to help correct misunderstandings held by the public regarding pain.

In a facilitated discussion, the meeting attendees discussed ways to address these gaps, including sharing existing tools and resources as well as bringing additional stakeholders to the table, including more patient advocates as well as individuals representing governments, large foundations, global health organizations, employers, and payer organizations.

On September 15, three days after the kickoff, the group reconvened to share what they had learned during the Congress. 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, said that she became encouraged, during her attendance of different sessions at the Congress, that the healthcare providers she met were so engaged.

“I heard many people tell me, ‘It’s about time!’ They were happy to see that people representing people with pain were at the Congress and starting to have a voice with the organization,” she said.

Belton added that such enthusiastic interactions can set the groundwork to help further the Global Patient Alliance at the 2020 IASP World Congress in Amsterdam. She says that there has been a fair amount of research about what it’s like to live with pain—research that could inform IASP’s future objectives and initiatives.

“So often, what’s important to patients isn’t considered in the development of treatments or in the context of patient care,” she told RELIEF. “We have the opportunity to close some of those gaps—and to set up a network that can push patient advocacy initiatives out—including that important provider education piece. By capitalizing on people who are engaged and enthusiastic about including the patient voice, we have the power to make a difference.”

Keith Meldrum, a deputy fire chief from Kelowna, British Columbia, Canada, and a patient advocate who was formerly the vice chair of Pain BC, an organization aiming to transform the way pain is understood and treated in the province of British Columbia, agrees. He added that there are some remarkable research projects and policy initiatives concerning pain and pain management that already exist—and the development of the IASP Global Patient Alliance can help organize that energy to help the greater community.

“We all have the same goals—to reduce pain. But, too often, we are all working on different trajectories to get there,” he said, in discussion with his fellow participants in the alliance. “It’s incumbent on this alliance to ensure that we can organize those trajectories, and all that great energy, so we make sure we aren’t missing any opportunities.”

First steps
The group came up with an initial list of ways that the new alliance can better integrate the patient voice in the future. Those ideas included developing new sessions for the 2020 IASP World Congress with combined provider/patient presentations; focusing on how patients view their pain—so-called patient narratives; including patient caregivers in research and policy discussions; and connecting with government agencies in order to drive healthcare system change. The group also restated its desire to see more provider education programs; to help clinicians better understand the biopsychosocial model of pain, which considers pain the result of a combination of biological, psychological, and social factors; and to see the development of pain management strategies beyond prescription medication.

The group also called for the development of a strategic action plan that would outline IASP’s goals for patient engagement over the next four years. But the first order of business is to get more stakeholders to join the alliance—and to work towards making effective patient engagement a reality not only for the next World Congress in 2020, but for IASP congresses and programs beyond that time.

There is a lot of work left to do, and the alliance welcomes other patient advocacy and pain organizations to find ways to participate. But even with just preliminary plans in place, Jennifer Hanson, director of education for Pain BC, told RELIEF she was excited about the possibilities.

“We have the chance to amplify the patient voice on a global level,” she said after the meetings. “We are working to set realistic goals about the kind of patient engagement we’d like to see at the next World Congress, as well as come up with ideas on how to model patient-provider partnerships as well as patient-research partnerships. It’s about modeling what successful patient engagement can and should look like at that level.”

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.