The Importance of Including Individuals With Lived Experience of Chronic Pain in Research


Pain experiences are varied, multifaceted, subjective and nuanced. Oftentimes, the voices of individuals who have endured chronic pain are excluded from research. Studies are frequently presented through the lens of individuals who have not lived through the pain experience. This creates a significant gap in understanding. Even the most well-researched data will have a remarkable deficit if it does not include the perspective of individuals with chronic pain conditions.

The narrative of “us vs. them” is often projected when relating to patients and providers, patients and researchers, or patients and policymakers. Engaging with patients during research and treating them as partners in the research process is a critical part of ensuring that the most important voices are included. Patient advocates should be trained as patient partners who can connect with researchers, as well as provide support and advocacy for their patients.

Ideally, research will involve patients, patient advocates, patient organizations, scientists, clinicians, health care providers, and policymakers working together to research, understand, assess, manage and raise awareness of the experience of chronic pain. Through this, studies produced are more effective and accurate, which leads to helpful methods of pain management being determined and relayed to those in need.

Additional source: BioMed Central: Springer Nature