Yes, patients and caregivers are experts

Does being a patient make you an expert on your condition? According to the Canadian Institutes of Health Research (CIHR), the short answer is “yes.” However, before we take the word of the country’s largest health-research funder, let’s dive deeper into this trending topic.

I recently came across a piece in Healthy Debate by Frank Gavin entitled “The Risk of Equating ‘Lived Experience’ with Patient Expertise,” and started questioning my knowledge as a caregiver related to my child’s condition.

Like many other parents of children with life-threatening food allergies, I have gained an intricate knowledge of what works and what doesn’t, something multiple health-care providers could not equip me with. Food allergy tests, for example, are not foolproof. Clinicians rely on parents to track symptoms and triggers to obtain an accurate diagnosis that would otherwise elude them. Should I then not consider myself an expert after diagnosing and managing my child’s complex health problem for years?

Other questions that arose following my perusal of Gavin’s viewpoint, in which he advocated for restraint in awarding patients expert status, and Francine Buchanan’s response, in which she asserted her expertise as a caregiver following her management of a health condition as a mother, included:

How do you define a health-care expert?

What does it take to be an expert?

Does the rigor of formal education and the acquisition of credentials to comprehend a disease outweigh the rigor of experiencing life with the disease?

Ultimately, what is gained or withheld by bestowing patient-expert status?

The need for clarity in commonly used health-care terminology is long overdue. A shared understanding of certain terms can greatly enhance the effectiveness of discussions and lead to more meaningful outcomes. Take, for instance, the term “patient,” which brings up several thought-provoking questions:

Who qualifies as a patient?

Does anyone experiencing any form of distress automatically fall under the category of a patient?

Should a woman giving birth in a hospital be classified as a patient, or is she simply a woman in the natural process of giving birth?

Do individuals in the advanced stages of life, grappling with the natural challenges of aging, qualify as patients, or is it only when they become eligible for palliative care or other end-of-life services that they assume this designation?

These inquiries bring to mind Gavin’s initial article in which he asks: must we always identify as patients? Whether we view it as fortunate or unfortunate, this is how medicine has unfolded over the past few decades. I learnt this while crafting my PhD thesis in which I gathered evidence to de-medicalize end-of-life care. In this journey, I came across Anne Kelleher’s book, Social History of Dying, that provides a commendable exploration of this subject.

The book outlines how the experience of dying has transitioned from one that took place within communities, surrounded by family, friends and neighbours, to one that is increasingly managed by teams of health-care professionals in more private settings. With a growing number of deaths occurring in hospitals in developed countries, many individuals indeed experience their final stage of life, the most natural and inevitable life experience there can be, within health-care facilities, thus being categorized as patients.

This scenario parallels various other health-related circumstances. As economies progress and evolve, individuals gain improved access to health care that is delivered through a multitude of institutions. This expansion leads to the emergence of new roles and caregiving models. Consequently, the responsibility for managing basic health and well-being shifts from individuals and families to one that is shared with health-care providers.

While a cadre of health-care experts oversee the delivery of care and services, the ultimate recipient, often referred to as the “patient,” grapples with establishing his or her own identity within the complex array of resources offered by the health-care system. Unfortunately, patients frequently find themselves in the position of bystanders to their own treatment and journey, being referred from one “expert” to another.

Patients possess a unique expertise born out of their first-hand experiences in managing their conditions.

After a long journey of diagnoses, some accurate and some misleading, the patients eventually find themselves as the only individuals deeply invested in their own well-being. They unravel the intricacies of their health management, whether it involves clinical treatments, navigating societal interactions or simply handling day-to-day impediments caused by their deteriorating health. Over time, they become proficient in various aspects of their conditions, gaining a comprehensive understanding of the interconnected complexities that extend beyond the clinical or physiological aspects that clinicians may be confined to. This expertise empowers them to strive for the optimal health outcome – the goal of every health-care system for a patient.

Patients possess a unique expertise born out of their first-hand experiences in managing their conditions. Moreover, in today’s interconnected world, they can connect with thousands of others who share similar experiences through social media platforms. As individuals navigate these systems, they come to the realization that they are not alone in feeling like bystanders in their own health management.

A growing number of patients are essentially advocating for an equal say in their health-related decision-making by seeking recognition as experts. While clinicians are adept in understanding diseases, their grasp of navigating the system for optimal health outcomes often falls short. On average, clinicians allocate only 10 -20 minutes per patient. How can they gain a deep understanding of individuals’ multifaceted health struggles? In my view, clinicians’ expertise, essential for achieving the best outcome but often requiring knowledge of day-to-day struggles rather than just treatment information, likely cannot match that of those living with the disease.

As a health-care researcher and a caregiver, being the mother of a minor with complex needs, I can’t help but commend the CIHR for recognizing patients as experts. Over the years, I’ve connected with many others who have encountered conflicting approaches regarding diagnosis and treatment from clinicians, making their expertise seem questionable.

Undoubtedly, those with professional designations have undergone rigorous evaluation and merit acknowledgment. However, it’s important to consider the scope of their training and evaluation. In fact, it would be reasonable to argue that their training is due for an update. A revised curriculum should recognize the limitations of their knowledge. Medical professionals seldom have to navigate health care for anything beyond their prescribed scope of training, evaluation and testing. Their ability to bring together the various components of a health-care system to achieve optimal patient outcomes has not been thoroughly assessed. It’s one thing to provide a diagnosis, referral or prescription, and quite another to be deeply invested in the outcome.

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  • Donna Rubenstein says:

    Thank you Mehreen! thoughtful and insightful perspective that was a relief to read. Words matter and the term expert does carry a lot of weight in research communities. Given where we are today , I am encouraged to see this recognition . Bravo to CIHR – this leads the way . It is also encouraging to see the conversation happening in many forums – it’s about time!.

  • Flora Knight says:

    I agree with the writer’s comments that patients possess a unique knowledge due to their first hand experience in our health care system. In my rural hospital we have for many years been providing the benefit of this knowledge from a group of members including myself on a Patient and Family Advisory Council. This idea of patient advisors has been recommended by the WHO and has been implemented in many hospitals. Members are able to provide input into the improvement of patient care in a variety of areas as well as improving the communication between staff and patients.

  • Sandra Kraus says:

    Totally agree. Great article. Having been an RN, I research extensively the orders or meds a Dr. Provides- a natural skeptic. I believe I’m still alove and fairly well( for a goldie oldie thru this way. Had I totally agreed with a doctor, my son would not be alive, I would never have had children(2). Weigh the choices carefully and know your body. Thank you.

    • Mehreen Zaman says:

      Thank you for sharing your perspective, Sandra, and I’m glad to hear that you found the article resonated with your experiences. Your background as an RN and natural skepticism highlight the importance of being an active participant in one’s own healthcare journey. It’s truly commendable that your careful consideration of medical decisions has had such a positive impact on your life and your family’s. Your story serves as a powerful reminder of the significance of informed choice and advocating for oneself. I wholeheartedly agree – listen to your body, do your due diligence and don’t override your intuition purely based on someone else’s credentials.

  • Diana Ermel says:

    Very well said. I had the opportunity to attend the webinar showing of Falling Through the Cracks (https://gregswings.ca/) yesterday; a video and conversation about a young man who died due to in part to the inability of health care practitioners to access all the information from a variety of sources about a patient as well as not really listening to the person, i.e. knowing better. Thumbs up to CIHR and patient oriented research. POR is all about patients being equal partners on research teams, because they do have that expertise of their experience. Patients also need to be equal partners in their care team (as others have said this is not a new idea) and the health/disease system barriers that prevent that need to be examined and removed.

  • Frank Gavin says:

    Thank you for reading and responding to my article, Mehreen.

    About what’s most important, we are in agreement. Patients’ and caregivers’ knowledge and skills need to be recognized and incorporated in healthcare settings. And many patients and caregivers are indeed experts in managing their conditions, in navigating systems, and sometimes in the conditions themselves.

    But I don’t think being the most “deeply invested in the outcome” necessarily makes one an expert. On Monday I could be diagnosed with, say, bowel cancer, but I think everyone would agree that I won’t be an expert about anything to do with bowel cancer on Tuesday–or maybe in a year of Tuesdays. I might eventually acquire expertise about treatment options and navigating care, but I also might decide to learn just enough to be an “OK manager” of my condition because, for me, that’s how I can best lead my life. I might even decide to leave some treatment decisions mainly or even entirely up to my doctor(s). That’s a choice more than a few patients make. Some may find the expectation that they become “expert patients” not a help but a burden.

    A few years ago I read a comment from the CEO of a children’s hospital that “all our parents have PhDs in their children.” I appreciate the good intention behind the comment, but I think the analogy is wrong. We parents have deep and indispensable knowledge of our children, but that knowledge is, in important ways, quite different from the knowledge PhD holders have in their particular areas of specialization. I’m probably not the only parent who would hesitate at calling myself–or even my wife–an expert in our child.

    My concern is that, to correct some deep historical imbalances, we (patients and caregivers) wind up mirroring the highly hierarchical structures of the academic and healthcare worlds or we find ourselves insisting that simply being a patient makes one an expert. I have been told I am an expert by healthcare providers who ten minutes before didn’t know me at all. It wasn’t helpful.

    • Don Taylor says:

      Couldn’t agree more. We are way too quick claim expertise, when what we mean is that we have (sometimes) considerable personal experience with the symptoms of our condition. Or we are way to quick to defer to the expertise of a highly trained person who doesn’t have the experience in dealing with our unique situation. What we need is more mutual respect and more mutual problem solving, so that we don’t get sidetracked with an unproductive debate about who is, or isn’t an ‘expert’.

    • Mehreen Zaman says:

      Thank you for adding your thoughts, Frank!

      It’s great to know we share the view that patient input is crucial in treatment-related research and decision-making. I completely agree that receiving a diagnosis doesn’t automatically make someone an expert. Through my own experiences with various healthcare providers as well as by connecting with many other patients, I’ve learned to approach individuals in white coats or with impressive titles with a degree of caution. Clinicians come with varying levels of competence and the ongoing search for true experts has prompted the emergence of platforms like ratemds.com with millions of doctor reviews.

      There are too many stories of patients facing misdiagnoses, negligence and receiving incorrect information during their healthcare journeys. On the flip side, there are countless accounts of patients who, through their own dedication and research, have taken an active role in their treatment decisions, often diverging from clinician advice. Many have found great satisfaction or even saved themselves from lifelong regrets, as some of the comments on this article have pointed out.

      My aim is to empower patients to not blindly accept decisions based solely on authority or credentials, which they are prone to when they’re in a vulnerable position. It’s also crucial to remember that many areas of medicine are still evolving, and evidence-based practices have their limits. That’s why we should be careful not to dismiss patient intuition purely based on credentials, especially when dealing with those with long-standing chronic issues.

      I believe patients should use the resources available to gain as much knowledge about their condition and treatment as possible. This way, they can ask the right questions and make informed decisions with confidence. After all, they’re the ones who will live with the consequences of any treatment-related decision.

  • Elliette Portal-Stanley says:

    A very accurate and comprehensive article on patient’s daily interactions to obtain a better health and care.
    In an ideal world, clinicians in their studies should be given the option of experiencing the caregiver’s roles and responsibilities in all its complexities .

  • Judy Murray says:

    Thanks for this article. The concept of people with chronic diseases being the “expert” in their lives and health care professional being the “experts” in disease has been promoted for years in the chronic disease self-management world (reference to Kate Lorig’s work at Stanford). For optimal management and outcomes, it takes a partnership between the patient and professional.

  • Mike Fraumeni says:

    Very informative read and wonderful to see how experience of the patient and caregiver is so important in any discussion of health care. As well, bioethicist and philosopher discusses in many of her articles and in this presentation this very aspect of subjective experiences in health care. Link below:

    “Diane O’Leary: “All in Your Head”: Medicine’s Worrisome Struggle with Subjective Evidence”


Mehreen Zaman


Mehreen Zaman is an evaluation scientist who acquired her PhD from University of Toronto’s Dalla Lana School of Public Health. She is also a devoted mother and caregiver, advocating for patient-centered approaches to health-care delivery. She is passionate about empowering individuals to take an active role in their health and well-being.

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