The risks of equating ‘lived experience’ with patient expertise
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.