Soph Box – By Sophie Soklaridis, PhD, Column Editor, and Author
I love telling stories. One story I’d like to share with you is about my evolution as an education scientist who is committed to coproducing research through equitable partnerships with patients, health professionals and researchers. My hope is that it will help you partner with people outside of your discipline, content area and even philosophical orientation. Perhaps the lessons I have learned along the way will inspire you to work toward equitable relationships within the physician-patient dyad and ultimately improve patient care.
I am a social science researcher. My undergraduate and master’s degrees were in sociology and my PhD was in public health science, with a strong social science lens. My training exposed me to various critical theories. Critical theories are grounded in social and political philosophies that focus on identifying and overcoming social constructs that privilege some people and oppress others. A social construct is a culturally accepted reality that does not exist objectively, but that develops through our interactions with one another and with the world around us.
Most sociologists believe that a person’s experience of illness is socially constructed. Illnesses have both a biological and an experiential component. These components exist independently of each other. Critical theorists argue that social constructs can be used to manipulate and dominate particular groups of people. For example, it is our culture, not our biology, that dictates which illnesses are stigmatized and which ones are not, which illnesses are considered disabilities and which ones are not, and which illnesses are recognized by the medical profession and which ones are questionable (Conrad et al., 2010).
When I finished my PhD, I was hired on to projects to study patient experiences of illness and care. In the early 2000s, attention focused on understanding the doctor–patient relationship to improve patient care. Today, this relationship is often considered to be complicated by a growing emphasis on patient autonomy, as an article in the New England Journal of Medicine (Derse, 2022) described:
Though expansion of patient participation in decision making has been salutary when there are reasonable medical options to be considered, the physician–patient relationship has been especially challenged in instances when patients demand interventions that physicians deem medically inappropriate, nonbeneficial, or “futile.” [my italics]
And there’s the rub. As a critical social scientist, I would problematize the notion that physicians know what’s best for patients and therefore should be the ones who decide what treatment options are available. Physicians are certainly highly- trained professionals with expertise in medical treatment, but patients and their families have important experiential knowledge that physicians may dismiss. I believe that if patients and their families want to try a treatment and understand the risks, it is their right to choose. I’ll share an example from my own life.
When my son was 23 years old, he complained to me about feeling unwell. He was a strong young man who was excited about having started his first “real job.” He sought care from his family doctor, but he felt worse as time went on. His gastrointestinal issues started to affect his quality of life. He lost a lot of weight, had 10+ bowel movements a day, and described his stomach as feeling like it was on fire.
Diagnostic tests showed inflammation and suggested Crohn’s disease, but the results came back negative. My son spent the next four-and-one-half years suffering while trying every possible medication for irritable bowel syndrome, which I knew he didn’t have. At year three, we begged the GI specialists to let him try a biosimilar. They looked at us like we had three heads. No way. This, despite two trials of prednisone that made my son feel better until he tapered off the medication. The GI specialist said that my son “must be experiencing a placebo effect” to the prednisone.
Our family doctor thought my son might have an atypical form of Crohn’s, but the inflammation was never severe enough, although the symptoms certainly were. The GI specialists thought my son was mentally ill. A young man, with no history of depression or anxiety, suddenly gets physically ill, but because the specialists “couldn’t see anything,” it had to be a mental illness. Our doctor could not convince the specialists otherwise.
When my son became skeletal and too weak to get on a plane, we decided to go to the Mayo Clinic in Rochester, Minnesota. We drove during the pandemic, afraid of being turned back at the border, but we were determined to get there. The GI specialists at the Mayo Clinic believed that my son had a rare form of Crohn’s that lives in the intestinal wall. They suggested we try a biosimilar. We started treatment at the Mayo Clinic because we did not believe our GI specialists back home would agree to try it, given their reaction to our earlier request.
Long story short, my son got better. The color returned to his face after treatment #1. He is healthy again. Last weekend, he went skydiving.
I think about this experience often, but this is the first time I have written about it. As a scientist who studies the importance of the patient voice in research and care, I found this experience to be disempowering and frustrating. How could I not influence my health professional colleagues? Why did they not believe me when I told them, “I think there is something else going on. This is really not like him.” Why did the specialists ignore the family doctor?
Naturally, I worry that the work of my critical social science colleagues who are committed to forming partnerships with patients to improve patient care may not be changing the system. We may not be contributing to the structural and cultural shifts needed within our organization and our society to truly partner equitably with patients to co-produce knowledge. We do not live in an equal society, so it is likely that we also do not have equal partnerships. This work and the emotional impact it can have is a constant reminder that authentic engagement is not easy.
I am not sharing this story to point blame because that’s not productive. But as an educator, I promote life-long learning, and this personal experience can teach us valuable lessons about recognizing patients and their families as experts in their own health and care. I have deep respect for my health professional colleagues. But I wonder whether sometimes physicians should not be the sole decision-maker when it comes to determining what treatment or intervention is best. There is an important role for informed and knowledgeable patients and their families. Perhaps we should look at how patients can consent to treatment that physicians deem medically futile. If we had that option, my son would not have suffered with undiagnosed and untreated Crohn’s for so many years.
We can learn from the experiences and perspectives of patients to recognize them as holders of legitimate knowledge and expertise. People with lived experience are not a homogenous group, but they share a common goal of liberation from social injustices, including epistemic injustice, which occurs when a person’s experience is devalued, often due to prejudice, by people in position of power, who are considered legitimate knowers. For physicians and researchers, adopting a social justice lens requires that they acknowledge historical injustices, practice cultural humility, and engage in continuous reflection and reflexivity in order to foster equitable and authentic partnerships with patients. Maybe we can think of those partnerships as skydiving together.
Conrad, P. & Barker, K. (2010). The social construction of illness: Key insights and policy implications. Journal of Health and Social Behavior, 51, 67–79.
Derse, A.R. (2022). The physician-patient relationship. New England Journal of Medicine, 387, 669–672. DOI: 10.1056/NEJMp2201630
Sophie Soklaridis, PhD is a Senior Scientist, Centre for Addiction and Mental Health and Associate Professor, Departments of Psychiatry and Community and Family Medicine, University of Toronto.