The six types of patient knowledge: Focus on Navigational Knowledge

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

The inspiration for this blog is from 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 experience are unique and essential for healthcare professionals.    

• Embodied knowledge  

• Monitoring knowledge  

• Relational knowledge  

• Medical knowledge  

• Cultural knowledge  

• Navigational knowledge  

Navigational Knowledge

Today, I want to focus on navigational knowledge – what this is, how unique this is to patients, and how we can learn from it when educating HCPs.   

From living with their condition, patients acquire navigation knowledge, developed through repeated interactions with healthcare services as they learn how to access resources, and how to overcome the barriers often encountered along the way. Patients develop an understanding about how the system works, but also how to work within the system to obtain the care and services they need. 

Navigation knowledge is shaped by patients’ repeated attempts to find care, deal with institutional obstacles, and secure what they need, such as medication, GP appointments, diagnostic tests, test results, or specialist consultations. Through these experiences, patients become experts at identifying where services are available, how to access them efficiently, and how to navigate the system’s administrative hurdles.  

It is procedural in nature – rooted in practical, step-by-step processes, such as knowing which phone number to call, what information to provide, or when the best time is to contact a particular department. Over time, patients learn how to get through to the right person or department, how to expedite appointments, and even how to present themselves in ways that maximize their chances of being taken seriously by healthcare professionals. 

The best example I have of this is from our 2022-2023 program on the ultra-rare condition fibrodysplasia ossificans progressiva (FOP)*  In our podcast series, patients described how many hurdles they have had to go through to find a HCP who knew about their condition, and therefore could treat their symptoms with confidence. Even though this has often been a long process for FOP patients, this navigational knowledge has been invaluable to (1) Ensure that they can identify and travel to the right expert; and (2) Communicate their navigational pathways to other patients and other HCPs who can help them with symptom management.  FOP is truly a condition where the patients often know more about the condition than the general practitioners that they encounter, and in these cases, the patients’ navigational knowledge is golden. 

Patient faculty in our program on primary biliary cholangitis (PBC)* talk through similar struggles in trying to navigate their healthcare systems to find practitioners that have active listening skills to truly understand and react to their quality-of-life concerns. Nevertheless, having these skills of knowing how to handle the healthcare system and finding the right HCP, has helped these patients achieve the care and treatments that they need. 

Patients have a deeper understanding of the healthcare system than the professionals working within it because they experience the system from the outside (the good, the bad and the ugly). While each HCP may be focused on their specific roles within a larger institution, patients see how the entire system interacts—or fails to. They know where the bottlenecks are, where communication falls apart, and what is needed to overcome these challenges. 

For example, a patient who regularly seeks care may know that a certain clinic’s phone lines are difficult to reach at specific times, or that some specialists require referrals that take weeks to process. As a result, patients’ navigation knowledge often surpasses that of healthcare professionals when it comes to understanding the system’s practical flaws. 

The Art of Presentation

In addition to knowing how to access services, navigation knowledge includes understanding how to present oneself to healthcare providers. Patients learn to tailor their communication based on the type of care they need. For instance, during an appointment with a specialist, a patient might emphasize certain symptoms or use more technical language to convey the severity of their condition. Conversely, when meeting a general practitioner, they may take a broader approach, discussing overall health concerns. 

This strategic presentation of information is a key aspect of navigation knowledge. It involves not only knowing what to say but also how to say it, ensuring that the patient is perceived as credible and deserving of attention. This can be crucial in securing timely care, as patients who understand how to communicate effectively are often more successful in getting their needs met. 

In conclusion, navigation knowledge is an essential tool for patients. It empowers them to manage their care more effectively, helping them to overcome the barriers that so often exist in healthcare systems. For medical professionals, understanding the value of this patient knowledge can foster more empathetic and responsive care. By recognizing the expertise patients bring to the table, healthcare providers can improve communication and collaboration, making the system more accessible for everyone.  Navigation knowledge not only underscores the importance of patient-centered care, but also serves as a reminder that healthcare systems, while complex, can be better understood and navigated through the lived experiences of patients. 

How can we incorporate this into medical education?

One way to work with patients’ navigational knowledge within medical education is to consult with patients during the development of your educational programs.  Ask questions such as: 

• What is your navigational experience?   

• What are the processes for you within the system?   

• Who do you see?  

• Where do you perceive bottlenecks?  

• What did you struggle with during diagnosis, or treatment pathways?   

• What helps you to manage the system?    

This feedback can be used to create patient-tethered education, such as:  

• Handouts for HCPs to give to patients explaining the pathways. Who is who within the HC system.   

• Hints and tips for what to ask each HCP during the process.  And what to expect 

• Video modules showing the patient pathway, incorporating patient experiences, their fears, etc 

• For rare conditions, we can create handouts detailing the expert centres where they can seek guidance and advice 

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 medical knowledge. 

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