Patients’ experiential knowledge and expertise

I recently came across a very interesting scientific article, published almost 50 years ago, with concepts that are definitely still relevant and important today:

Borkman, T. (1976). Experiential Knowledge:
A New Concept for the Analysis of Self-Help Groups. 
Social Service Review, 50(3), 445–456. https://www.journals.uchicago.edu/doi/10.1086/643401

I have been a chronic disease patient now for almost four decades and a couple of years ago, I became the first person in the world to earn a PhD on the topic of Parkinson’s disease (PD) while living with PD. My knowledge of PD is extensive, both theoretically and experientially. With this in mind it really is a mystery why I adopt a “physician-centered” approach when I encounter a new physician in healthcare. Physician-centered means that I hide how much I know about medicine, healthcare, and PD. I also don’t volunteer any theories of my own as to what ails me, instead I wait for direct questions. Why do I do this? To avoid being seen as a “difficult patient”, because difficult patients get lower quality care (as shown by research: Frosch et al., 2012; Mamede et al., 2016).

Thanks to the article I read recently I now have a new understanding as to why I feel the need to be physician-centered. The article was published in 1976 and authored by Thomasina Borkman, professor at George Mason University. She seems to still be active in research, see her ResearchGate profile.

So, why do I find this article so interesting? It gave me new ways to think about and talk about the specific knowledge we acquire when we become patients. Let’s start with some definitions from the article, and I apologize beforehand for the many direct quotes, professor Borkman just puts is so well herself.

Experiential knowledge: “truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others.“
“The two most important elements of experiential knowledge are (1) the type of “information” on which it is based and (2) one’s attitude toward that information.”
The type of information is wisdom and know-how gained from personal participation in a phenomenon […] This wisdom and know-how tend to be concrete, specific, and commonsensical, since they are based on the individual’s actual experience, which is unique, limited, and more or less representative of the experience of others who have the same problem.
The second critical element of the definition is the certitude that what one experiences becomes indeed knowledge.

Experiential expertise is defined as: “competence or skill in handling or resolving a problem through the use of one’s own experience. While everyone with the same problem may have experiential knowledge, the degree to which an individual has integrated the information and become competent in applying it to a problem varies.“

Professional knowledge is “truth developed, applied, and transmitted by an established specialized occupation”. Borkman emphasizes that: “Professional knowledge” is a better-known concept and a more widely accepted source of truth than experiential knowledge”, furthermore that: “Professionals are respected, deferred to, and treated as authorities by clients who are convinced that the professionals possess truth. […] Many professionals expect their truth to be accepted without question. Some of these professionals who visit self-help groups often get upset when they do not receive the deference to which they are accustomed.”

On the relationship between professional and experiential knowledge, Borkman writes (underlinings by me): “As sources of truth, professional and experiential knowledge are not mutually exclusive.
First, even professionals use some experiential knowledge in their practice. Newly credentialed professionals are not regarded as seasoned until they have had personal experience in the real world of work. This experiential knowledge, however, is defined within and subsidiary to their professional knowledge.
Second, both self-help groups and professionals can and do allow for a second source of truth as a legitimate input to a problem. Some professional models, such as client-centered therapy, show great respect for the experiential knowledge and expertise of clients.
Third, an individual may have and use both sources of truth simultaneously. The physician in a wheelchair specializing in the rehabilitation of the physically handicapped has available both sources of knowledge. A member of a self-help group may also be professionally trained in the problem the group is trying to solve; for example, some stutterers in self-help groups in the United States are also speech therapists.
Experiential and professional knowledge can coexist […] for they are neither inherently conflicting nor antithetical, especially if applied to different phenomena. Conflict occurs when there are competing sources of authority about the same phenomena.“

Borkman also lists similarities and differences between professional and experiential knowledge. Both kinds of knowledge are properties of an individual, which can be pooled and organized on a shared basis. When it comes to differences, experiential knowledge is pragmatic, oriented to here-and-now action, and holistic, where professional knowledge is theoretical, oriented to systematic accumulation of knowledge, and segmented. A statement that resonates strongly with me is that in interacting with others with similar experiential knowledge, “the individual learns how his problem is both similar to and different from that of others”.

What are my main take-aways from this article? I will need some more time to process this excellent article and how I can use it in my own research and I hope that by writing this blog post, I can find others who want to discuss further with me. These are my main conclusions so far:

1. The reason that I behave physician-centered is because patients’ experiential knowledge is still an under-researched, poorly understood, and, most importantly, un-acknowledged concept.
2. By living with disability, illness, and similar, patients acquire experiential knowledge. To become a skilled physician you need both theoretical and experiential knowledge. It is possible to get theoretical knowledge from a book or similar but experiential knowledge has to be lived. This means that physicians cannot fully understand the patient perspective and patients cannot fully understand what it is like being a physician.
3. Patients and healthcare professionals have so much to gain from understanding our respective perspectives better. Currently the biggest need is in better understanding, describing, and acknowledging patients’ experiential knowledge and expertise.

About the illustration to this blog post

I asked ChatGPT to help me illustrate the blog post, this was our conversation:

Me:
illustrate “experiential expertise”

ChatGPT 4o:
Experiential expertise refers to the knowledge and skills gained through personal experiences, often contrasted with formal education or theoretical learning. It emphasizes the insights and understanding developed from direct involvement in a specific activity or field.
To illustrate this concept, imagine a scene where two people are interacting. One person is reading a book or manual, representing theoretical knowledge, while the other is engaged in hands-on activity, such as fixing a car, cooking a complex dish, or navigating a challenging hiking trail. The person performing the task is demonstrating experiential expertise, showcasing confidence, skill, and a deep understanding of the process gained through experience.
Here’s a prompt to create the illustration:
“A scene depicting two individuals side by side. On the left, a person is reading a book or manual, symbolizing theoretical knowledge. On the right, another person is engaged in a hands-on activity, such as fixing a car, cooking a complex dish, or navigating a challenging hiking trail. The person performing the task is confident and skillful, illustrating their experiential expertise gained through direct involvement and personal experience.”
Would you like me to generate this image for you?

Me:
Yes

ChatGPT 4o: