“One must learn to embrace the expertise of others, just like one expects one’s own expertise to be embraced by others.”

Abhijit Naskar

By: Annamarie Fuchs, Creator. Partners in Health | Conversations

January 15, 2021


I have been privileged to offer support as an advocate and health system navigator to people in need for most of my career. In 2008, I was working with a young adult patient with complex multi-system Lupus and her mother. This young woman had renal, cardiac, and pulmonary disease and had spent the better part of that year in and out of hospital. It was during one trip to the hospital from their remote rural community where they shared a disconcerting experience with me. The young woman’s kidney function had dropped to 8%. She was prescribed high dose prednisone, a commonly used corticosteroid and immune suppressant drug, and started on a 6-month course of Cyclophosphamide, a chemotherapeutic drug. It was shortly after the first dose of Cyclophosphamide and early in the morning that they were to travel to the city to receive the second dose that the mother discovered her daughter had been coughing up considerable amounts of blood and was beginning to experience shortness of breath and chest pain.

Later that morning when they arrived at the hospital her physician ordered a chest Xray. Nothing remarkable was identified so they were told the bleeding was likely a case of bronchitis and the second dose of Cyclophosphamide went ahead as prescribed. Despite what they had been told, the exhausted mother’s misgivings intensified. She had been reading about the medications her daughter was being given and knew that there was a remote chance the Cyclophosphamide might be implicated in the bleeding. After attempting to convey her worry and her ‘gut feeling that something was wrong’ the physician’s frustration began to mount. He rolled his eyes and barked “don’t make me play the doctor card” to which the mother immediately responded, “don’t make me play the mother card.” After a short silence, the physician replied; “don’t forget that the doctor card trumps the mother card every time.” The patient and her mother were left feeling stunned, ashamed, and disempowered. Years later, she courageously shared their story with a group of physicians from across Alberta who had gathered to talk about professionalism. Her final comment after telling her story was to plead with the group and to remind them that “we all matter! We are all kind of a team, aren’t we?”[1] As it turns out that the drug was indeed the culprit and after the second dose of Cyclophosphamide, the young woman nearly died.

More recently, I heard about an experience from another woman who is the parent of a young adult with lifelong chronic and complex health challenges. When her daughter required tube feedings, they attempted to explain to the nutritionist that from previous experience it was found that she required far more calories to sustain her than what was generally recommended. The nutritionist ignored their advice, relying only on her/his own expertise in calculating and prescribing the standard calories and formulation. The results were not unexpected. The patient became malnourished and required additional interventions.

When I was in graduate school nearly 20 years ago, we studied the Sinclair Inquiry into the tragic deaths of 12 children who underwent cardiac surgery in Winnipeg in 1994. It was eventually found that 9 of the 12 deaths could have been prevented if the warnings from nurses had been acted on rather than what ultimately occurred; decision making focused entirely on the opinions of a surgeon who was found to have been “out of his league”[2] at the time. Despite the obvious systemic and organizational issues that clearly contributed to these tragedies, it was later noted that while  the complexity of the patient cases went well beyond the skill of that particular physician and his team, the warnings from front-line registered nurses who had the expertise and experience to recognize what was unfolding, were largely ignored.[3]

The common thread that runs through each of these stories can be attributed to the lack of respect or acknowledgement for the expert contributions of every member of the team rather than the health professionals themselves. While specialists, family physicians, other health professionals alongside front-line support staff should indeed be recognized as experts and valuable members of a high functioning health care team, the most commonly overlooked member of that team remains the patient or his/her advocate or family member. Nobody is more expert about the patient than patients themselves – or in some cases, the patient’s advocate. If we hope to reap the benefits of a health system that is truly centered around the principles and actions of person-centered care, we must acknowledge that everyone including patients and family members has knowledge and expertise to offer. So, how do we define expertise in this context?

Defining and understanding expertise

The Merriam Webster online dictionary defines the term ‘expertise’ as the skill of an expert or an expert opinion.[4] In “Frontiers of Psychology, 2014” Bourne, Kole, and Healy describe expertise as “elite, peak, or exceptionally high levels of performance on a particular task or within a given domain.”[5] Furthermore, most of us will admit that to be considered an ‘expert’ you must have credentials, experience, widespread recognition, or preferably all three. So, what does it mean for a patient or a family member to be recognized as an expert about their own health care? As a patient, are my contributions to the team valued as a type of expertise relative to my lived experience, my social environment, my body and how it responds, or my culture and values? Likely not so much. And please know that this is not meant as a criticism! It’s an observation from someone who has been on both sides of this argument. I’ve been a clinician who occasionally didn’t listen to or take to heart what my patients or their loved ones were telling me as much as I should have. And, as a patient, I have certainly not been heard when trying to convey important information about ‘me’ to the team. Finally, as an advocate I have frequently been ignored when conveying what I believed was critical information about an individual.

Bourne, Kole, and Healy point out that at one time, the physician was believed to be the only individual qualified enough to decide what was best for a patient and in fact, it was considered cruel to impose that level of decision making on the patient! Times have indeed changed. Today, expertise is seen to be objective, descriptive, and context based. An expert, they describe, is anyone who has specific know how that is based in some measure on the resources they bring to the conversation.[6] What’s more, in a British Medical Journal commentary dated June 14 2003[7], Kennedy prompted health professionals to consider their own biases by evaluating whether they truly see patients and family members as experts or merely passive recipients of the knowledge, expertise, and authority of the ‘real’ experts. The author went on to say that “…there are at least two bodies of knowledge that are relevant to the exchanges between doctor and patient – the doctor’s and the patient’s. Both are experts in their own fields – the doctor in clinical matters and the patient in her or her own experience, feelings, fears, hopes, and desires.”[8]

When we acknowledge the contributions of all members of the team as providing their own expertise based in context; by sharing experience, knowledge, and perspective, there is no doubt we’ll enjoy more trusted relationships and improvements in both satisfaction and clinical outcomes. A well-known and remarkable example from the aviation industry known as Crew Resource Management (CRM) recognizes that when everyone including the ground crew and the luggage handlers can stop a flight if they see or know of something that concerns them, lives can be saved. In 1977 an airport disaster resulted in the deaths of 583 people. The Tenerife airport disaster[9] is known as the deadliest crash in aviation history. Following that event, CRM was implemented widely across the industry as a means to leverage all resources, observations, and opinions in order to promote greater safety and ultimately better outcomes. All members of the flight crew are encouraged to challenge anyone when they believe something is not correct. Further, the pilots are trained to listen to all members of the flight crew and to evaluate all decisions in light of the concerns (expertise, observations, and instincts) that are being expressed. In situations where human error can have devastating effects, CRM focuses on directly actioning the value of the contributions of all team members through interpersonal communication, leadership, and decision making.

The health care world is no less affected by human error. In fact, in Canada’s healthcare system, “there is a death from patient harm every 13 minutes. It is the third leading cause of death in Canada. One out of 18 hospital visits results in preventable harm. These incidents generate an additional $2.75 billion in healthcare treatment costs every year.”[10] It’s clear that the we must learn to respect, accept, acknowledge and act on the contributions and expertise of everyone on the healthcare team. Kennedy reminds us that “in my view, these days most professionals do not seek to exclude patients. Rather, they genuinely, often mistakenly, believe that they are involving them, or they don’t know how to do so, or they find the business too emotionally taxing. The lesson is simple… we should not criticize nor blame professionals. Instead, we should help them through the barriers that prevent them from seeing their patients as interactive partners.”[11]


The last word, for now. How do we acknowledge the ‘expertise’ of the other?

It’s important to keep in mind that health care professionals work in a complex, unique, and exhausting environment where compassion fatigue, stress, and constant exposure to the suffering of others makes them particularly vulnerable.[12]  Very few health professionals set out on any given day to discount the opinions of others, ignore patients and family members, or announce that the ‘doctor card trumps the mother card every time.’ Learning how to respectfully communicate with the entire team and particularly with patients and their family members is a skill set that is no less critical in the health care environment than it is in aviation. A well developed and trusting relationship between physicians or other clinicians and the patient/family has been shown to improve patient outcomes as well as patient compliance.[13] By encouraging patients and family members to consistently contribute their own knowledge and expertise to the decision-making process, clinicians will also undoubtedly reap the benefits.

Frank Gavin, an Anglican priest, theologian, and professor of political science at MIT observed that we need to better understand the expertise patients have when the only thing that they may know very well is their experience of a particular condition. If different patients live with the same condition in very different ways, how will we determine who has the appropriate degree of expertise? In fact, he suggests that identifying a patient as an expert might be problematic when the answer might lie instead in choosing to see each other as equals rather than experts:

The final problem resulting from the idea that patients are experts is that it may not do justice to—and it may even obscure—the deep experiential knowledge nearly all of them possess. Many patients are eager to share this knowledge not just to improve their own health but to improve the quality of care for others or the relevance of research. They know what no one else knows: how a change in dosage affected their ability to perform certain daily activities, what exactly helped them endure an especially difficult phase of their illness or treatment, or why an outcome not previously of interest to researchers (e.g. quality of sleep or ability to climb stairs) matters more than the outcomes researchers think of first (e.g. length of stay in hospital or distance walked in six minutes). This knowledge is no less valuable for not being expert knowledge. We don’t have to be experts to be equal.[14]


Whether you are a credentialed member of the healthcare team, a patient, a family member, a housekeeper, porter or other, please respect and appreciate the value of contributing  your own knowledge, experience, and expertise while offering the same measure of respect for others. Don’t be afraid to speak up and remember, the worst that can happen is that you might be wrong. However, by speaking up and listening to others, the life you save might just be your own.



[1] Ibid

[2] Associate Chief Judge Murray Sinclair, Provincial Court of Manitoba. The Report of the Manitoba Pediatric Cardiac Surgery Inquest: An inquiry into 12 deaths at the Winnipeg Health Sciences Centre in 1994. http://www.pediatriccardiacinquest.mb.ca/pdf/pcir_intro.pdf


[3] Associate Chief Judge Murray Sinclair, Provincial Court of Manitoba. The Report of the Manitoba Pediatric Cardiac Surgery Inquest: An inquiry into 12 deaths at the Winnipeg Health Sciences Centre in 1994. http://www.pediatriccardiacinquest.mb.ca/pdf/pcir_intro.pdf

[4] Merriam Webster Dictionary. https://www.merriam-webster.com/dictionary/expertise

[5] Bourne, L.E., Kole, J.A., and Healy, A. F. Expertise: Defined, described, explained. Frontiers in Psychology, 2014: 5: 186. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3941081/

[6] Ibid.

[7] Kennedy, I. Patients are experts in their own field: The interests of patients and healthcare professionals are intertwined. British Medical Journal, Saturday 14 June, 2003. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1126161/pdf/3261276.pdf

[8] Ibid.

[9] Aviation Knowledge: Tenerife Airport Disaster. http://aviationknowledge.wikidot.com/asi:tenerife-airport-disaster & https://en.wikipedia.org/wiki/Tenerife_airport_disaster

[10] Canadian Patient Safety Institute. Awareness of the Patient Safety Crisis in Canada. April 2019. https://www.patientsafetyinstitute.ca/en/toolsResources/Awareness-of-the-Patient-Safety-Crisis-in-Canada/Pages/Awareness-of-the-Patient-Safety-Crisis-in-Canada-2019-04-23.aspx#:~:text=In%20our%20healthcare%20system%2C%20there,healthcare%20treatment%20costs%20every%20year.

[11] Kennedy, I. Patients are experts in their own field: The interests of patients and healthcare professionals are intertwined. British Medical Journal, Saturday 14 June, 2003. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1126161/pdf/3261276.pdf


[12] Amutio-Karega, A., Garcia-Campayo, J., Delgado, L.C., Hermosilla, D., & Martinez-Taboada, C. Improving Communication between Physicians and their Patients through Mindfulness and Compassion-Based Strategies: A Narrative Review. Journal of Clinical Medicine, 2017, 6, 33; doi: 10:3390/jcm6030033

[13] Shaghayegh, V., Hamzehgardeshi, L., Hessam, S., Hamzehgardeshi, Z. Patient Involvement in Health Care Decision Making: A Reivew. Iran Red Cres Medical Journal. 2014 January; 16(1): e12454. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3964421/pdf/ircmj-16-12454.pdf

[14] Gavin, F. The risks of equating ‘lived experience’ with patient expertise. Healthy Debate Opinions. February 13, 2019. https://healthydebate.ca/opinions/patients-as-experts

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