
When we conceptualize and define health, whose perspective matters? How do we decide how to measure and study health? And where does experience and science collide?
These were questions I was left pondering after attending an immersive pain science training program this June called the North American Pain School. The program was attended by a group of trainees, scientist-practitioners, researchers, and two people with lived experience of pain. Each session had a discussion element, and on one particular occasion, the topic was the transition from acute to chronic pain. Acute pain is defined as pain that lasts less than three months and is often due to things like an injury or medical procedure (e.g., surgery). Chronic pain is defined as pain that lasts for three months or longer. These definitions have long guided clinical practice and research, however these timelines and the transition from acute to chronic pain are hot topics for debate in the field of pain.
As everyone shared their opinions on this topic, I began to notice an interesting difference in perspectives emerge. Researchers and practitioners talked about specific diagnostic factors, persistence of symptoms, profiles, and other issues related to how pain is conceptualized in a medical sense. People with lived experience, however, raised points around the experience of pain and how they were impacted by it, regardless of whether their pain was considered chronic by definition or not.
I was fascinated by the diversity in perspective around how to define a clinical term, and what elements of the pain experience were pertinent for each group. For some, it was important to know how to define pain to ensure consistency in research. For others, the impact of pain and challenges with treatment was pertinent in informing their perspective. Others raised points about the importance of being able to make evidence-informed clinical decisions. No one group argued that their perspective was more important or valid, however overall, a comprehensive picture of what matters when thinking about the topic of criteria for chronic pain began to emerge as this diverse group discussed these elements.
Looking back on this experience, it became apparent that this was an informal, yet excellent example, of “exchange”. Exchange is a knowledge translation (KT) activity that the Canadian Institutes of Health Research defines as an interaction between researchers and those who are impacted by evidence, where both parties can learn from each other and inform the work at hand. While exchange is often used in research, it presents an opportunity to rethink how we conceptualize clinical concepts that emerge from research. For example, the definition of pain was recently updated in 2020, a process that involved exchange between a range of stakeholders, including researchers, clinicians, and people with lived experience, resulting in a more comprehensive definition of pain. If we were to engage in exchange processes more readily in instances like revising a clinical definition, could that change how we define specific types of pain or other health conditions? Would different symptoms or experiences be represented and therefore conditions more easily diagnosed? And how might our research methods and questions be different when we engage in these discussions more consistently?
Exchange activities present an opportunity to learn from each other, consider broader perspectives, and embrace the intersection between science and experience more readily. The opportunity to be part of a discussion like the one I did was a powerful reminder of this. Even though the experience was an informal discussion, it is experiences such as that one that can set us on a different path based on something we learned from someone we normally do not interact with. This may ultimately have the potential to change the way health care is conceptualized and practiced.