Does being a patient make you an expert? The Canadian Institutes of Health Research (CIHR), the country’s largest funder of health research, certainly seems to think so. Eight times in the patient engagement framework for its Strategy for Patient-Oriented Research (in which patients are partners in all phases of the research process), the CIHR attaches the word “expert” or “expertise” to patients.
There appears to be a hedge, however. In one statement, patients are said to “bring the perspective as ‘experts’ from their unique experience and knowledge.” Why the quotation marks around “experts,” which to me seem to qualify or even question the view that patients are actual experts? If it were simply a statement of fact, the quotation marks would not be needed.
Most of the time when patients are called—or call themselves—experts, there are no quotation marks, no hedging. That patients, especially those living with chronic conditions, are experts is, for many, not just a fact but a conviction. It’s not hard to understand why this is so.
Health care and health research are full of experts whose status is signalled by white coats, titles, lots of letters after their names, and much deference directed their way. There are specialists and sub-specialists as well as fellows and post-docs—and not just among physicians. It is a very hierarchical world in which expertise is the coin of the realm.
Enter the era of patient preferences, shared decision-making, and patient-oriented research—each founded, at least in part, on an altogether welcome and necessary recognition that patients possess essential knowledge and important skills and that long-standing power imbalances need to be eliminated. One obvious way to signal the change is to claim and promote the same status for patients as doctors have long enjoyed—that of expert. Told many times that they are experts, as I have been, many patients accepted the designation. Others arrived at the idea on their own.
So what’s the problem?
One difficulty is understanding what exactly patients are expert about. Experts, whether they are medical specialists, computer scientists, or historians, have well-defined and usually quite narrow areas of expertise. To achieve expert status they have had to demonstrate their knowledge and skills in relation to clear standards, and have had that knowledge and those skills rigourously assessed and, one hopes, re-assessed. Never infallible, their opinions carry extra weight within their fields but not outside them.
Rare have been the attempts to define patient expertise. And when attempts have been made, the definitions have usually been very imprecise. In 2003, Ian Kennedy wrote in the BMJ that a patient is an expert “in his or her own experience, feelings, fears, hopes, and desires” (which seems to me a definition of a very highly evolved individual). Recently, I read a paper by four patients who argued that patient partners in research projects should be compensated in part because they have “a Ph.D. in Lived Experience.” But if “lived experience” (is there another kind?) qualifies one for a Ph.D., shouldn’t we all have one?
Some say patients are experts about their own conditions. I do know patients—particularly those with rare diseases who have spent years pursuing a diagnosis and have had to educate their family doctors and others about their disease—who have become experts. But it seems to me that for most patients, having a disease makes it harder to see and understand it with the objectivity expertise requires. I once had Guillain-Barre Syndrome. My symptoms were relatively mild but persistent, and the circumstances of my life at the time made the experience especially frightening. While this made me more knowledgeable than most about Guillain-Barre, the only thing I know very well about the condition is my experience of it.
Many say all (or most) patients are experts in living with their conditions, but different patients choose to live with the same condition in very different ways: Some learn—and keep learning—all they can about symptoms and therapies, while others learn the minimum they find to be necessary and direct as much of their attention and energy as they can to other things. Which is the expert way of living with the condition, and by what criteria will anyone determine who is more expert?
Another problem is the anxiety that the expectation of expertise sometimes imposes. Last week, I read this tweet advocating for patients’ immediate access to their health records, in this case radiology reports: “Patients with chronic illness are informed enough to read and interpret [my emphasis] these reports accurately.” Really? All patients? Most patients? One can be entirely in favour of patients having ready access to the information they own, as I am, without thinking they are or should be able to interpret that information themselves. But if they feel they should, they may be that much more reluctant to ask what they fear will be regarded as a stupid question. And some will misinterpret the reports, perhaps with serious consequences.
We should also keep in mind that many people with chronic conditions have struggled to become simply competent at managing their conditions and their lives. They might welcome some recognition of their hard-won competence but experience any expectation that they become expert patients as an anxiety-inducing burden they don’t need.
The final problem resulting from of 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.
Frank Gavin is the chair of the Citizen Engagement Council of CHILD-BRIGHT, a CIHR SPOR national research network focused on children with brain-based disabilities and their families.
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Sorry for the long delay in replying, Nancy. Thank you very much for sharing your experience and your insights. I agree with you. One thing I am very glad about is that health care professionals take children’s pain, especially chronic pain, much more seriously than in the past.
As a pain researcher and as the parent of a child – now young adult – living with severe chronic pain, I find this an interesting piece.
What I hear a lot of in parent/patient forums is anger at not being listened to and having experience dismissed by medical experts. Similarly, I often hear parents trying to help their children live with pain feel that the person giving (scientifically backed, solid) advice don’t have any experience in trying to implement that advice. I remember looking at my son’s doctor when he told me how important it was for my son to go to school and thinking how I could barely get him from the bed to the bathroom. Did he have any idea what he was asking of me? The doctor was an expert on pain and headache treatment. He knew the research backward and forward. But he was not an expert on implementing and applying the research in real life settings.
What many people living with pain and their caregivers/parents are looking for is for the doctor-expert to also be an expert in the ‘how’. The doctor is expert in best practices and treatments – this is why the patient comes to them. The patient is an expert in the barriers and problems associated with the condition. After they try an approach, they may also be experts in problems in implementing the approach. What many are looking for is for the doctor to develop expertise in helping with practical implementation. By prescribing/recommending an approach without that expertise, the doctor demands that the patient become the expert in implementation. However, as was correctly pointed out in this piece, patient experience is limited. I know a lot about my son’s pain and what works for him. As a parenting researcher, I can recommend best practices about effective parenting in general (that’s my professional expertise). Being a creative stubborn person who believes in the methods my son’s doctors prescribe, I have come up with some creative solutions to how to implement them in my particular setting.
But how much better I would be at that if I had lots of experience with many different situations and solutions!
In other words, I am looking for an implementation expert. That is the expertise most medical professionals lack. Patients (and caregivers) have experience, but they are not experts because their experience is narrow.
Read new book The Expert Patient: Great Health is NOT a Spectator Sport on Amazon. Released Aug. 2020.
There’s a compelling scene in the first episode of the recent CBC mini-series “Unspeakable”, which magnificently dramatizes the tainted blood atrocity of the 1980’s that saw thousands perish as a result of contaminated blood products. A mother is pleading with her hemophiliac son’s physician to change blood treatment product after presenting evidence she had gathered pointing to a growing number of HIV transmission through blood products. After rebuffing her repeated requests and demeaning her evidence, he rises from behind his desk, and angrily dismisses her saying “Look, I’m the medical professional here.” He continues to his office door opening it, holding it open for the woman, a teaching professional, and says with mocking arrogance, “So you can get back to teaching the ABC’s now.”
That scene illustrates the core power imbalance in healthcare that is at the heart of the debate over who is the expert. I’m one of the co-authors of the paper you cite – https://pxjournal.org/journal/vol5/iss3/2/ – and thank you for that. As a patient I’ve participated in debates on this “patient expert/expert patient” topic across the globe, from NZ to UK and USA. For many it fits neatly into classic anti-oppression terms.
I’ve heard it argued that patients are an oppressed class. That gains made in Patient participation have come at the courtesy of those holding power. As a result, the vocabulary used is one established by those in power. So when patients speak of being experts the term seems to be misplaced. As it rightly is. When patients co-opt oppressor terms with their own metaphors, the oppressor views these as a challenge to authority. “PhD in lived experience” is best understood through this lens. It could also be argued that the Nuka system term for patients – Customer Owners – is more reflective of the health system user in Alaska than the conventional oppressor term “Patient”.
This battle over who the expert is or is not, is one of semantics. It’s one of power, control, and authority. It’s quite clear now that partnering with the public is essential to the success of any research or quality improvement and that this movement of shared purpose is perceived as a threat by those in control. The transfer of power to a more equitable model isn’t going to come without great resistance.
Our biggest challenge is in learning how to communicate. This move to patients as partners often comes without a definition of “partner”. Does it mean equal or majority or minority partner? Professionals graduate from training with a 35,000 word vocabulary. Patients are forced to learn a language without the leisure of years to study, and yet many have been able to do it.
Meanwhile HCPs, policy makers, administrators, and researchers resist learning the language of human experience. When they do learn it, they understand better why homelessness and loneliness clog up emergency rooms and why empty slogans like “hallway medicine “ring hollow; why grandmothers may deliberately ignore their medication; why opioid addicts are not lying about their pain when they come for prescription refills; why people with diabetes ration insulin and hide their needles from their families.
True equality doesn’t come from imposing a tyranny of professional credentials. In an equal partnership each side represents a specialized knowledge base fundamental to the needs of the partnership. HCPs bring their training. Patients bring their human experience, each one unique and complex. Who’s the expert? That’s oppressor language. Partnership language is different, recognizing the centrality of reciprocity in the relationship.
It’s not too late. We can learn from the mother in Unspeakable that shared experience is superior to expertise, that collaboration is more important than subordination. And the sooner we learn it the better, in order to harness the human experience to reduce pain and suffering and avoid more catastrophes like tainted blood.
Im a patient with a long term condition and stroke survivor as well being a healthcare Director. I don’t believe I’m I’m an expert in any other patient experience nor my own. But I do have an insight I can share about my own experiences but it in now way makes me an expert in patient experience.
Many thanks to Frank Gavin for this very thoughtful and sensible article.
The idea of empowering some patients as experts is very problematic when it comes to mental illnesses. People with more mild conditions are told they are experts based on their own experiences. The Mental Health Commission of Canada has built an expanding infrastructure based on this notion in their guidelines for training and supervising peer support workers. Their guidelines don’t require or even suggest that peer training programs teach anything about mental illnesses; in fact, many peers hold the fashionable opinion that mental illnesses aren’t real illnesses. This is becoming a workforce that can undermine medically necessary treatments.
I discuss these problems in these two articles:
https://www.huffingtonpost.ca/susan-inman/peer-mental-health-workers_b_9009252.html
https://thetyee.ca/Opinion/2018/10/25/New-Standards-Fail-Mental-Illnesses/
The question is not whether the patient possess knowledge of his or her often unique experience, but whether it is used with the professionals in the management of his condition. Having the title of ‘expert’ is empty in a system that systematically values standards established by the professionals more than the individual experience of the patients.
Thanks for your response, Ted. I agree with you about what the question is not and about the need to value the experience and the experiential knowledge of patients. My view is that addressing that need by insisting all patients are or must be experts is not so helpful.
Interesting thoughts
Being an expert in your experience of your disease is not the same as being an expert in “ the disease” but by the same token the medical practitioner may well be an expert in the disease but can never really understand its impact on your living .It is arrogant of those medical people who think they are .
One of the basic problems I believe is that in some specialties in particular neurology where during their training such a reliance is placed on the skill of observing the patient . and because observation is the doctors skill and therefore validated by her/him as being reliable and accurate that they often forget that during a consultation is an incredibly short snap shot in time .In some diseases the doctor can never observe the true impact of the disease on the patient.
Listening to the patient is always going to be less validated by the medical profession because it requires you to trust someone else’s observations or opinions rather than your own.
Consultant Obstetrician with a progressive debilitating neurological condition who is constantly amazed at how well she functions during her consultation with her neurologist
Thanks for your thoughts, Nikki. I think the arrogance of “medical people” that you speak of, which just about everyone has experienced at least once, is one reason many people feel they have to assert that they too possess expertise. I was also struck by your comment about the value of listening–really listening–to the patient. It must be more than a hundred years ago the William Osler said (in an era before pronoun change) “Listen to the patient and he will tell you the diagnosis.”
Still, I remain skeptical that the expert/expertise frame is the best one to describe what patients know about their experience of a particular condition or combination of conditions. I’ve heard many patients say they are experts about their own bodies, but I keep being surprised by mine and never feel I have the detachment or objectivity expertise demands to examine or assess all or part of my body in the way an expert would. That is not to say I don’t know things about my experience of a condition or about a subtle change in sensation or about some effective way I have of, say, dealing with pain that no doctor would know and that he or she would–or should–find it useful for me to tell him or her, but I just don’t think labeling that knowledge as expertise or myself as expert makes sense.
Modern medicine has made amazing advances thanks to the expertise of experts in the field. We all benefit from their years of dedicated study and singular focus. The move to discredit such experts is difficult to understand. Patients’ differing experience of diseases is of interest to such experts and adds to their depth of knowledge. The next patient will be the beneficiary of this pooled knowledge.
So, of course, I agree with Frank Gavin in this well reasoned article.
Thank you for your response, Mary. Your comments made me recall that the people I’ve known or heard about who had the greatest depth of expertise were almost always genuinely humble–perhaps because they were well aware of all they didn’t know. And just to underline a point I hope I made: some patients are experts, but it’s important to be specific about what they are expert about.
In the UK NIHR use Public Contributor for members of the public on their funding panels and undertaking reviews.
Time after time with polls undertaken the term patient is preferred to service user in the field of Mental Health.
I undertook the EPP course some years ago and took the voluntary tutor course More recently undertook a Patient Leader course with Oxford AHSN but you know what I still prefer to be known by my birth name and work collaboratively to work with providers and commissioners to bring about change in service design my experience of co-creating co-design and co-production came years ago in research with the application of PICO methodology personally I would allow the individual to express their preference about how they wish to be known/preferred to the paid professional does not have the same degree of choice.
Thank you, Francesco, for sharing that information and those thoughts. I wrote an earlier piece that was partly about changing ideas about what “patient” means and implies: http://healthydebate.ca/opinions/patient-centred-care
I know some people with mental health conditions who strongly oppose being called “patients” even when they are receiving healthcare services. Others don’t object at all. In healthcare settings I think asking others what they want to be called and telling others what one wants to be called are very important. Some parents of hospitalized children like being called “Dad” or “Mom”; others hate it. There’s a simple solution.
Lived experience is too often over looked. Great article. I believe patients should be partners in their care. The paradigm is shifting as patients become more engaged and are self advocating.
Thank you, Wanita, for responding. I agree that it’s good the paradigm is shifting. It’s important for all to recognize that self-advocacy and engagement can take many forms. And I know some will, at least for a while, choose not to engage with some institutions or groups or individuals.That’s OK.
Dear Frank,
Thank you for reflecting so thoughtfully on the meaning of “expert.” In my experience, the “white coat” experts in health care rarely have a problem acknowledging the limits of their own experience. Today, when I accompanied my father-in-law to see his cardiologist, she ruled out heart problems but noted that his low blood counts might indicate other issues. However, she declined to interpret the results of his recent bone marrow aspirate because it was “not her area of expertise.” She outlined many reasons why it would be inappropriate and possibly even harmful for her to speculate about the results. Instead, she reminded my father-in-law that he was the “expert” on how he was feeling from day to day and encouraged him to contact the hematologist with concerns if his condition deteriorated before his next appointment. I left the meeting feeling that each of us had contributed our own experience and insight, and each had deferred to the expertise of the others. In short, we were a team of equals trying to solve a complex problem.
Thank you, Valerie, for reading and responding to the piece. Your account illustrates, among other things, the importance of recognizing, in an explicit way, what others know and what we ourselves don’t know.
HIV is a good example of Institutionalized denial and neglect until they found it could be heterosexual. Many of those with Lyme and tick-borne diseases are researchers, biologists, entomologists and health care providers themselves but PHAC and public health officials won’t talk to any one that doesn’t agree with their dogma. There are almost 13,000 items on Lyme in the PubMed data base. Only 200 or so support the opinions of the medical experts and the remainder paint a completely different picture of the disease. This means that like HIV/ AIDS we are over 30 years behind in research. There have been no advancements in that time and the last government funded research was 15 years ago. Patient powered research may be the only option for those fighting for a diagnosis and their lives.
Not my area, Rob, but I don’t think HIV research is “30 years behind”. My understanding, from the drugs we reviewed in The Common Drug Review, is that there have been huge advances in treatments for HIV and they began not long after the virus was identified. My understanding also is that the push by people with HIV, mostly gay men at the time, was powerful.
Just noticed this, Frank, I believe Rob meant that Lyme research is 30 years behind due to bigotry impeding areas of research, similarly to HIV research previously being far behind in research due to bigotry impeding areas of research.
HIV has caught up now, but if science and health care had recognized their own biases earlier, they could have saved millions of people before it spread so far
Patient experience and Big Data can be used to solve problems that would be too expensive, slow and not relevant to most people. Gold plated double blind experiments have great limitations when dealing with a heterogeneous population. SEE!
-MyLymeData2018 Conference: Seeking Cures Together. Johnson LD, Lymedisease.org 18-08-09: https://www.youtube.com/watch?v=I6BrMf3DQvA&t=1503s
-MyLymeData2017, Lorraine Johnson’s presentation, YouTube, Johnson L, 17-04-21: https://www.youtube.com/watch?v=VegR2RxAdAQ&t=268s
It may be relevant to consider how people with HIV greatly influenced the research agenda and the sense of urgency about it a few decades ago. Your comment also made me recall the work of Pat Furlong, a parent and nurse, who has had a big impact on research related to Duchenne Muscular Dystrophy:
https://www.newyorker.com/magazine/2010/12/20/mother-courage-john-colapinto
https://www.parentprojectmd.org/about-ppmd/
PHAC, Health Canada, CIHR and AMMI [Canada] speak with one voice on the Lyme disease issue and do whatever their U.S. sister organization tells them to do. Patients and their experts are siloed and serve as window dressing when all important decisions are made without transparency or collaboration behind closed doors. They handed the $4 million for research back to the status quo researchers and public health officials responsible for the situation. No matter how great the problem there never is money for basic research. We need a seat at the table where decisions are made. Everyone who spoke or wrote about the Conference to Develop a Federal Framework on Lyme disease was told that their input would be carefully considered. They must have considered it and discarded all of it in its entirety.
It is so depressing that the Lyme schism still exists 25 plus years after I had to become a “super patient” myself to get the help I needed for my own illness. I really thought ll these years later the truth about how strong the anitbiotics need to be for how long would have become undeniably obvious in thousands of case histories.
Instead, I count my lucky stars I am symptom free due to some open minded and sympathetic physicians who listened to all the evidence, and read the cites I supplied. But even that took five years and my own ascending paralysis before it was finished.
A very thoughtful article — beautifully set out. My understanding was that the idea of an expert patient was advanced in part as Frank Gavin indicated to address the power imbalance between professional providers and patients. And it was also used to help legitimize and promote the role of patients in managing their care. The Expert Patient Programme in the English NHS was all about enlisting patients with chronic conditions in the management of their care. There was a BMJ editorial (March 25, 2004) entitled “ ‘Expert patient’—dream or nightmare?” suggesting that for many practising physicians the term expert patient had become synonymous with the over-informed patient “…..The suspicion is that for many doctors, the expert patient of the imagination is the one clutching a sheaf of printouts from the internet, demanding a particular treatment that is unproved, manifestly unsuitable, astronomically expensive, or all three…” Hopefully, we have advanced beyond this.
Thank you for your response, Neil. I agree that we have to get beyond all the caricatures and sweeping generalizations. I recognize that caricature of the expert patient. There’s also the caricature of the doctor whose entire knowledge of a condition is derived from a one-hour lecture long ago but who is making pronouncements to the patient who’s lived with the condition for twenty years–as depicted in a widely circulated tweet. Has it ever happened? Probably. But it is far, far from the norm.
The over-anxious patient who reads too much and may understand too little certainly exists. But let us not forget that the opposite end of the spectrum is certainly there as well. There are countless cases where astute, aware and experienced patients have saved themselves from over treatment and medical harm by knowing more about their own details than any physician present. Our mental models also need to make space for that kind of patient, and too many arrogant doctors with short attention spans still need to learn, listen and respect the patient perspective too. I counsel patients all the time to respectually persist if they are pretty sure mistakes are happening.
I don’t disagree with anything you’ve written here, CB, except possibly with the idea that a patient can read too much–though I may have misunderstood what you wrote.
I agree that there have been many cases of doctors being arrogant and dismissive of–or simply not interested in–what patients say and know. My worry is that what you call, correctly, opposite ends of a spectrum will be seen as more common than they are. Most situations fall between the opposite ends where doctors who are not arrogant but who are fallible and patients whose astuteness, awareness, and experience are valuable but limited collaborate as best they can. In the past we deferred too much to doctors and didn’t question them as much as we should have, but now–at least on social media where the tendency to echo one another is so powerful–I get the sense that it’s some patients who claim something like infallibility for themselves. Happy to hear if you disagree.
This article is excellent, and important at a time when so many auto-didacts and people boasting about qualifications from the University of Life (Ph.D’s in Lived Experience) find it easy to get an audience.
No true expert boasts of certainty, but give me someone with specific academic qualifications interpreting my X-rays, please. Sure, power imbalances need examining,but everywhere, all the time, not just in examining chronic illness.
Thank you , Frank Gavin for your thoughtful, interesting piece.
Thank you for your response, Mabel–or is it Margaret? I think you may have social media or maybe the internet in general in mind. Yes, there have been many benefits, but it’s hard to imagine the false claims about vaccination would have spread so quickly and persisted so long without social media and the internet. But that’s a whole other can of worms.
Just a quick correction again. Anti-vaccine have a very long history and were often fostered by Doctors mistakes–or their reports they issued of vaccine problems. It wasn’t the Internet, and it wasn’t patients.
Note: Great Osmond Hospital’s report in 1974, and the Lancet publishing a doctors’ 1998 measles/autism paper without checking his data or his records. The Lancet left that paper up on it’s website for 12 years even though the link was disproved quickly. They only took it down after someone else proved it was fraud.
Doctors did this, not patients. And not the Internet.
https://measlesrubellainitiative.org/anti-vaccination-movement/
Thanks for your comment, Aurelia. I agree that anti-vaccination movements–like the resistance to fluoride and to pasteurization–long preceded the internet. But I’ve heard and read many people (including someone from the University of Waterloo, speaking recently on CBC radio) observe that the internet has been a powerful means for extending and entrenching these movements. I’ve taken a particular interest in the campaign against the MMR vaccine and have a hard time imagining the discredited Wakefield claims being taken up by so many without the internet.