When I read the opinion piece by Frank Gavin entitled, “The risks of equating ‘lived experience’ with patient expertise,” an uneasiness settled in the pit of my stomach. I spent the next few days questioning my beliefs and myself. Did I consider myself an expert? Should I consider myself an expert? Am I wrong for wanting my knowledge to be taken on par with the medical professionals who treat my child?
Mr. Gavin argues that, “We do not have to be experts to be equal,” which seems to affirm my wish. However, to not equate my knowledge with “expertise” makes me feel grouped in a bucket that is “separate but equal.” How do I attain the status of equal if I am seen to be a “non-expert”? What am I?
What exactly are patients experts about? This is an important question Mr. Gavin poses. As a caregiver to a son with complex medical needs, I possess a level of knowledge few people do. Our family has learned how to navigate life outside the hospital while using machines you find only in an ICU: a ventilator, pulse oximeter, a feeding pump and oxygen tanks. Whereas medical experts know how these machines sustain your life physically, many lack the experience of troubleshooting a ventilator malfunction while riding public transportation. This is a form of mastery gained exclusively from hands-on experience—an experience few health care professionals have had.
These patient experiences—on public transportation or in transitioning from hospital to home—are where the voice of the patient/caregiver is most valuable. Whereas our health care system is filled with experts in surgery, pharmacy, community care and social work, it lacks anyone focused on the dark corners where all these areas intersect. It is in these dark corners that I find myself hanging out, and where I have to find the solutions that no one else seems willing to. Does fulfilling my role in these intersections endow me with expertise? If not, why do I feel the need to be considered an expert? I own a vehicle, but don’t feel the need to become a mechanic. However, when it comes to health care, patients and caregivers everywhere are pushing for expert status. What is the driver?
One reason may be the sense of powerlessness that comes with interacting with the health care system, the overwhelming sense of lack of control or dread that I feel when walking into an emergency room. We trust that the people working in emergency rooms have undergone years of training and evaluations. Nevertheless, can I trust that they have prior experience treating a child with my son’s complex history?
What has made those ER interactions more bearable is the paperwork I bring with me documenting past interactions with medications, complications we have experienced, and notes from prior doctors on my son’s treatment plans. That paperwork is my backup, my evidence, my knowledge for all to see. I hope that it shows others that I have some credibility, so that when discussing my son’s condition with the experts they listen to me. I think it is this credibility, power, and voice that patients and caregivers crave when we look to be seen as “experts.”
Mr. Gavin lays out the problems with me wanting to attain the position of expert. One is that I may be unable to bear the burden of fully understanding my son’s condition, and that this may lead to dire consequences, if, for example, I want to review my son’s medical records and then err in my interpretation. Although this may be true for some patients and caregivers, I would like to give them the benefit of assuming that they know their limits, which I think is a key aspect of being knowledgeable. Caregivers may not be experts in all aspects of our children’s conditions, but we have become experts in knowing which expert to call upon.
Mr. Gavin suggests that patients and families should be seen as separate but equal because we may be unable to “see and understand [our circumstance or condition] with the objectivity expertise requires.” This is an opinion I have come up against often, and it was a big part of my decision to return to university to complete my Ph.D. in health research. I believed that my past work experience in the private sector as well as my personal lived experience could help develop solutions to the problems I saw around me everywhere in the hospital. I also wanted to better understand how those with “expertise” saw these problems, developed solutions, and backed up their ideas with solid evidence.
During my past four years of studies, I have learned how to minimize bias and look at problems objectively. However, I have also faced the criticism that because of my role as a caregiver, my bias remains and always will remain. I have never questioned the biases of my fellow students, many of whom are clinician/scientists. I firmly believe that, just like me, part of their “expertise” is their ability to look objectively at a problem despite their own biases and the subjectivity that arises out of their past experiences, both personal and professional. This may not be true for all clinicians, but I want to give them the benefit of the doubt, a benefit not always extended to me, or my fellow patient/caregivers. Why is that?
There is something about being “separate but equal” or “non-expert” that I have a problem with. Within children’s hospitals, there are many types of jobs and roles. There are disease specialists, technicians trained on specific diagnostic tools, child life experts, nurses and administrators. Each of these people is considered an expert in their job and not seen as a “non-expert” by anyone. Maybe it is the system that surrounds them—bosses evaluating them, metrics and surveys measuring how good a job they are doing. Maybe that is what is missing from the patient world—we just don’t have anyone giving us grades, or giving us letters after our name. There isn’t a system in place to assess the knowledge patients and caregivers attain from their lived experience, or to support us in developing our expertise. Our knowledge is just not valued yet, and I am not sure that saying it is different than expertise is the best way to improve its value.
By arguing the question of whether patients and caregivers are expert or not, are we missing the point that the idea of expertise is just a substitute for having power, credibility and a voice at the table? I am not sure power can be afforded to us until the value of our area of expertise—the patient experience—is truly recognized and understood. There are many barriers to patients and caregivers gaining expertise. Being told we are not capable of achieving it because of who we are and our circumstances should not be one of them.