The IASP Global Alliance of Pain Patient Advocates (GAPPA): Incorporating the Lived Experience of Pain into the Study of Pain

Incorporating the lived experience of pain

In this invited op-ed, Joletta Belton and Blair Smith, co-chairs of GAPPA, discuss a new initiative aiming to advance pain research and care by incorporating the perspectives of people who have lived with or have been affected by pain. Image credit: rawpixel/123 RF Stock Photo.

Editor’s note: This invited op-ed is co-authored by Joletta Belton and Blair Smith, co-chairs of GAPPA. See related RELIEF content on the GAPPA initiative here.

Pain is a complex, nuanced, and often difficult experience. It is something we are all familiar with, something we have all experienced, yet it is really hard to define, and can be even harder yet to manage or treat. This is especially the case for pain that has lasted a long time – pain that might or might not be associated with any injury, tissue damage or disease, or that may persist long after tissues heal or any underlying disease is treated.

In the last few decades, huge gains have been made in the area of pain research. Our understanding of pain has changed, and our approaches to treating and managing pain are gradually following suit. But it can take a long time for research to make it into health care practice, and even longer to reach the public and reshape societal understandings of pain. Despite the gains in research and understanding, ongoing pain is a problem at a global scale and receives little national or international attention, or investment in efforts to control it.

Why is this?

The mission of the International Association for the Study of Pain (IASP) is “to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.”  This mission has largely been pursued by dedicated scientists and clinicians around the world, but has yet to be completed. What can we do to make this happen?

We believe it can only be done through incorporating into the study of pain the perspectives of people who have lived with or have been affected by pain. It is true that biology, medicine, sociology and psychology provide crucial insights into our knowledge of the processes and impacts of pain. However, without also including a deep understanding of the lived experience of pain, our knowledge is much too limited. As the essayist and scholar Nassim Nicholas Taleb once wrote, “Studying neurobiology to understand humans is like studying ink to understand literature.”

Those who have lived with pain or cared for someone in pain provide valuable insights into the experience of pain and into living well with or recovering from pain. We can’t gain these insights from anywhere else. They are essential in determining the most appropriate management approaches, and even more so in targeting priorities for research, designing effective studies, and implementing research into health care practice.

In 2018, IASP President Lars Arendt-Nielsen brought together an inaugural Global Patient Alliance to promote this effort. In 2019, the Global Alliance of Pain Patient Advocates (GAPPA) Presidential Task Force was formed, deliberately co-chaired by a clinician/researcher and a person with lived pain experience. Similarly, half of GAPPA’s members are clinicians and researchers drawn from IASP’s membership, and half are pain patient advocates, including people with lived pain experience and those who care for people with pain. Our charge is to develop the partnership between IASP and patient advocates and people with lived experience of pain around the world, to advance the study, understanding, and treatment of pain.

GAPPA’s vision is to work together to improve the lives of people affected by pain through effective and equitable integration of the lived pain experience into all aspects of pain research, management, education, and advocacy, across the world, for all people.

Its mission is to bring together patient advocates, patient organizations, scientists, clinicians, healthcare providers, and policymakers to create better outcomes in the awareness, understanding, research, teaching, assessment, and management of pain throughout the world.

What does this look like in practice? That will be ever evolving! It will depend on all of us coming together to shape what this can be, and doing it as well as possible. The following are some of what we, as co-chairs of GAPPA, think could be the most valuable contributions of this Alliance:

Patients as partners in research. This may begin with the development of research questions that are relevant and important to patients, should include the design and oversight of studies, and extend to the dissemination of research findings to the general public. There is a rich and growing practice of involving patients in research, and many research funding sources now require meaningful patient engagement. GAPPA can help to establish best practices and develop resources to facilitate patient engagement for patient partners and researchers.

  • Training patient advocates to be patient partners
  • Training researchers in partnering with patients
  • Facilitating connections between patient partners and researchers
  • Ensuring relevance of research questions, and processes of implementation into practice. This extends from basic biological science through to public health research, and beyond.

Patients as partners in the education of clinicians and healthcare professionals throughout the learning lifespan (undergraduate, graduate, and continuing education)

Partnering in practice

  • Contributing to clinical guidelines and how to best implement them in practice. Patient partners can help identify potential barriers to, and solutions for implementation in the real world and can help develop patient-facing materials in support of the guidelines
  • Facilitating peer support as an adjunct to treatment
  • Self-management education, resources, and support

Knowledge translation and dissemination of pain research and treatment/management guidelines to the general public and to patients, including programs in schools and communities, articles and content in popular media, social media, etc.

There is much that can be done, and much to do! It only makes sense to learn from people with lived experience of pain, and to include their insights and perspectives as a part of the pain conversation. This isn’t just good for patients – it’s good for clinicians and researchers, too.

Importantly, an early recognition of the GAPPA Task Force is that boundaries are blurred or even nonexistent. Many who are identified as “patients” have experience working in health care/research, and many who are identified as pain clinicians/academics have experience of chronic pain; this may be personal or vicarious. There is no “them and us” – there is only “us” – and we’re all in this together.

About the authors

Joletta Belton makes sense of her pain through science and stories on her blog, MyCuppaJo.com, and is co-founder of the Endless Possibilities Initiative, a nonprofit organization with a mission of empowering people living with pain to live well. Her experiences with chronic pain led her to become an advocate for advancing the integration of lived pain experience into the study, research, and treatment of pain, which led to her position as co-chair of the IASP Global Alliance of Pain Patient Advocates (GAPPA) Presidential Task Force. She is also an author, including a chapter in the second volume of Meanings of Pain, and is the first Patient and Public Partnerships Editor for the Journal of Orthopaedic and Sports Physical Therapy.

Blair Smith is Professor of Population Health Science, University of Dundee, Scotland. He is co-chair of GAPPA, and Past Chair of IASP’s Neuropathic Pain Special Interest Group (NeuPSIG), as well as the Scottish Government’s National Lead Clinician for Chronic Pain. An academic general practitioner, he now practices as a Consultant in Pain Medicine, NHS Scotland, and leads a program of pain research in collaboration with local and international colleagues. He has authored over 240 peer-reviewed research papers and various books and chapters, and has been a (co-) investigator on research grants totaling over £17M.  After decades of research and practice, he now has the opportunity to live with chronic pain and is grateful to the NHS for their support with this.

Editor’s Note: RELIEF is editorially independent of its publisher, IASP. All editorial decisions about RELIEF’s coverage of IASP activities are made solely by the RELIEF editors.