I vividly remember the first time I realized that my neurologist and I are in possession of vastly different although complementary types of knowledge. At the time, I had been a patient of his for a couple of years and in between appointments, I would write my questions about Parkinson’s disease (PD), my treatment, and other things that I thought were related to my condition on a list that I brought to my next visit. He would patiently answer my questions as best he could and on the subway going home from the clinic, I would start my next list.
One day when a particularly tricky question occurred to me, and I reached for my list, I had a terrifying insight: “What if my neurologist isn’t able to answer that question… What if he doesn’t know everything I need to know about all things PD-related… Who would be helping me then…?” It felt like an abyss opened right in front of my feet and I felt nauseous, similar to the vertigo you get at the top of a roller coaster, right before the steepest decline, but without the conviction that the constructors of the roller coaster have done their job properly and that you’ll soon be safely on the ground again. Over the next few days, I could think of little else. The abyss in my mind turned into a black hole, drawing all other thoughts into it and I walked around feeling like a zombie. Then, suddenly, I had an epiphany! And the zombie-fog-black-hole-abyss was gone, almost as quickly as it had appeared. “Of course! Why didn’t realize this before? It’s not possible for him to know everything, his responsibility is the theoretical knowledge of PD and the experiential knowledge from treating persons with PD in general. I have to take responsibility for my part: knowledge of my PD. Together we can be a great team!“
A few days ago, I wrote about a scientific article by Thomasina Borkman published in 1976 titled: “Experiential knowledge: a new concept for the analysis of self-help groups”. If you want to read that post, you can find it here. I found that 1976 article in the list of references (an excellent way to explore a research field is to check the reference list of an article you think is good) in an article published in June of 2024, namely:
Dumez, V., & L’Espérance, A. (2024).
Beyond experiential knowledge:
A classification of patient knowledge.
Social Theory & Health.
https://doi.org/10.1057/s41285-024-00208-3
Similar to the article by Borkman, the writing of Dumez and L’Espérance inspired me to think in new ways about patients’ knowledge. Now, two months later, I want to share my take-aways from their article.
The aim of the article was (underlinings by me): “(1) to challenge the dominant model of knowledge in medicine and healthcare by making the various forms of patient knowledge more explicit and tangible and (2) to provide a better understanding of what experiential knowledge consists of by classifying the various forms of knowledge patient acquire, develop, and mobilize throughout their care journey”. Similar to Borkman’s article, this one is also full of really great quotes, for example:
“Many concepts of patient-centered practice emphasize the importance of experiential knowledge as the cornerstone of shared decision-making and partnership in care. However, without a clear understanding of what this means, it remains difficult to put this recognition into action, to bring it to life at the heart of care delivery. This reinforces the clear epistemic injustice that remains in healthcare and social services.”
(Here’s a link to the Wikipedia page on epistemic injustice.)
“The biomedical establishment is known to give a deflated level of credibility to a patient’s narratives and lacks the necessary interpretive resources to make sense of a patient’s experience of illness and healthcare. In the healthcare economy of credibility, patients are given less authority by professional hearers when compared to the value usually granted to biomedical, scientific, and professional perspectives. Without highlighting their variety and specificity, patients’ experiential knowledge is given a vague meaning in contrast to professionals’ skills and knowledge formalized by academic training. This in turn undermines their perceived value in the production of quality care and decision-making. This can, in part, be explained by the lack of coherence between the definitions given to the concept of experiential knowledge and the ambiguity between the explicit forms of knowledge acquired and mobilized by patients in their journey.”
“In our perspective, it is essential to better define patient knowledge to give it its rightful place at the heart of the care relationships.”
“It is therefore more thought-provoking to ask the following questions: What are the sources of patient knowledge? What forms do they take? How are they activated and expressed?”
So, what did Dumez & L’Espérance find? They outline three sources of learning: the self, the system, and the community. Each of these correspond to two categories of patient knowledge, see the Figure below.
The self is “a fundamental source of implicit and explicit patient knowledge” and from that source comes embodied knowledge and monitoring knowledge.
Learnings from the system results from patients’ use of healthcare services and interactions with healthcare professionals. As a consequence, patients acquire navigation knowledge and medical knowledge.
Learning is inherently a social practice, which is why the community is important for patients’ knowledge. From interactions there comes relational knowledge and cultural knowledge. More information can be found in the article.
Why do I find this article so interesting and important? As I have already stated, it inspires me to think in new ways about patients’ knowledge. It also provides an excellent framework or classification that I’m looking forward to using in my own research. My main take-aways are:
- To enable genuine shared decision-making, both patient and clinician must be aware of, acknowledge, and respect each others’ theoretical and experiential knowledge bases. For this to be possible, I am convinced that the Dumez & L’Espérance classification is a great start.
- Both patients and clinicians need to fundamentally change our behaviors and attitudes towards each other.
- Even though I didn’t have the framework to put my thoughts into words at the time, the insights that came from my abyss-black-hole-vertigo-experience relating to my neurologist actually lead to me acknowledging our different responsibilities and knowledges. And even though we never talked about it, I am convinced that he also, consciously or sub-consciously, did the same. When he retired a couple of years ago, I had been his patient for over 25 years and we had an excellent working relationship.
If you, like me, want to learn more about patients’ experiential knowledge and expertise, I recommend that you read the article by Dumez & L’Espérance yourself, and don’t forget to check the reference list for further reading.
I found this quite inspiring. As a PD patient about to embark on a new treatment the idea that the knowledge base of the consultant and the patient is much more equally distributed than the hierarchical powerbase suggests gives legitimacy to challenges to the powerbase. We would do well to recognise this if we want to move on from making lists to shared decision making.