The six types of patient knowledge: Focus on Embodied and Monitoring Knowledge

Published by Caroline Halford

Welcome to the first in my?new blog?series focusing on the patient voice, patient lived experience, and?different types?of patient knowledge. ??

The patient voice – i.e. incorporating patients, their perspectives, knowledge, and needs – within medical education content is now becoming more normalized.?It’s?heartening to see the healthcare community listening to the patient mantra “Nothing about us without us” (ref:?https://onlinelibrary.wiley.com/doi/full/10.1111/jan.15122 ), meaning that education designed to help patients should surely involve the patients in the concept, development, and dissemination.?

I have recently returned from the?IME & Grants Summit in Boston MA , where?I?moderated a panel discussion on patient advocacy within medical education and grants.?It was heartening to hear about the different, diverse ways that patients are now able to contribute to and lead educational programs.?

This led me to thinking about the?different ways?that patients provide essential knowledge to the healthcare community.?These ways are brilliantly illustrated in a recent article in the Springer Nature journal Social Theory & Health (ref:?https://link.springer.com/article/10.1057/s41285-024-00208-3 ) where the authors classified?six?different types?of patient knowledge.?In?other words, six ways that patients’ lived experiences?are unique and essential for healthcare professionals.???

• Embodied knowledge?

• Monitoring knowledge?

• Relational knowledge?

• Medical knowledge?

• Cultural knowledge?

• Navigational knowledge

In this new five-part blog series, I want to summarize each of these?classifications and?give some tips as to how this could be incorporated into a medical education (and/or publication) project.?I?want to start off with embodied and monitoring knowledge, which are key to unlocking the patient experience.?

Embodied Knowledge and Monitoring Knowledge?

Embodied knowledge?is deeply rooted in the sensory and physical experiences of their body – their awareness of pain, discomfort, relief, energy levels, and other physical sensations. This unique perspective helps?patients?make sense of their health, illness, or disability.?Patients learn to listen to their bodies, using these signals to make decisions that are critical to their well-being.??

For example, in our?program on primary biliary cholangitis ?(PBC)*, our patient faculty?discuss?their challenges with?the side effects?such as joint pain?and?itching.?Their ability to listen to their?bodies and?use these debilitating symptoms as a motivation to seek medical advice and diagnostics?(rather than being dismissed) has become an important aspect?of?their journey towards treatment solutions.?

On the flipside,?patients’ embodied knowledge can lead them to shut themselves off from care, if they?encounter?healthcare providers?who lack?the correct knowledge to treat?them?appropriately. In our?2022-2023 program on?the ultra-rare?condition?fibrodysplasia ossificans progressiva?(FOP) ,*?patient faculty described?their?experiences with?un-informed?dentists, which?led?to?them receiving suboptimal care that?did more harm than good.?This meant that FOP patients sometimes ignored dental pain?to avoid the possibility of improper care.??

Embodied knowledge?remains?inaccessible to others, including healthcare professionals. While doctors can diagnose and prescribe treatments, they cannot fully experience the patient's internal world—the specific nuances of their pain, the exact nature of their discomfort, or the unique way their body responds to treatments. This exclusive insight is something that only patients, particularly those with chronic illnesses or disabilities, can fully understand. In this sense, embodied knowledge contributes to the patient's identity and social positioning, influencing how they perceive themselves and how they interact with others.?

Closely related to embodied knowledge is?monitoring?knowledge, a practical, day-to-day application of the awareness developed through lived experience. It refers to the skills patients acquire as they manage their illness, often through the use of?medical devices, medication, and self-care techniques. This type of knowledge involves a keen understanding of one's physical, mental, and emotional states and the ability to interpret these signals to manage their health effectively.?

Patients develop monitoring knowledge through continuous self-care practices—whether?it's?taking blood pressure, monitoring glucose levels, or fine-tuning medication dosages. This knowledge is both precise and personalized, allowing patients to tailor standard medical protocols to fit their unique needs. For instance, they may adjust medication doses based on how they feel or?modify?care routines to better suit their body's responses. This personalized approach to care is often more effective because it is informed by the patient's intimate understanding of their body.?

The continuous practice of monitoring knowledge not only empowers patients to manage their illness more effectively but also enables them to navigate crises and?maintain?a better quality of life. It?represents?a blend of standardized medical techniques and individually crafted care strategies, making it a critical?component?of self-care and disease management.?

A clear example of this is how patients are learning to self-manage diabetes through continuous glucose monitoring (CGM). As part of our ongoing program on?CGM in real-world settings ,** we recently published an interview with a patient, who spoke of his experience in recognizing the value of these devices to monitor his glycemic levels and avoid dangerous hypoglycemic events. Despite feeling sceptical and nervous at first the patient reported feeling a growing sense of empowerment and confidence through using a CGM to self-monitor – helping him to recognize the eating patterns that were causing glycemic spikes, and learning to modify his dietary routines to keep a more stable blood glucose level.?

In conclusion, embodied and monitoring knowledge are crucial aspects of patient care that highlight the importance of personal experience in managing illness. These forms of knowledge empower patients to take control of their health in ways that are deeply personal and uniquely tailored to their needs, often surpassing the limitations of conventional medical practices. Understanding and respecting these insights can lead to more empathetic and effective healthcare partnerships between patients and providers.?

How can we incorporate this into medical education??

• Consult with patients and?patient advocacy groups (PAGs)?when writing medical education agendas.?Invite patients to describe their symptoms and embodied experience in their own words.?What do they experience??How does it make them feel? ?How does it affect their day to day lives and decisions??Can they share any examples? ?What would they like to change?about their condition and symptomology??What do they want HCPs to know when treating this patient population??Some of these topics may not be known to the physician population, and can provide a rich source of information for patient-centric?education.?

• Ensure that you ask open questions with plenty of room to broaden your discussion?if the patient wants to.?Often ‘lightbulb moments’ happen when the conversation is free flowing.?

• Consider patient-led content (such as a patient panel, a patient-physician discussion,?or a downloadable clinical aid to help prompt HCPs to have open discussions about symptomology and shared decision-making in clinic).

Do you have other examples of how navigational knowledge can be incorporated into medical education programs? ?Please comment or share – I would love to hear from you.?

Stay tuned for the next blog, which will speak on navigational knowledge.?

*These programs are?made possible thanks to independent educational grants?from Ipsen.?

**This program is funded by an independent educational grant from Abbott Diabetes Care.?