Dr. Shanna Cameron’s article, “Embodying Expertise: The Influence of Online Information in Health Decision Making” will soon be published in Issue 8.4. In this interview, assistant editor, Amy Reed, interviews Dr. Cameron to learn more about the advantages of taking a rhetorical approach to studying complex conditions and patient experiences.
AR: Your introduction provides a helpful description of Asherman syndrome as a rare condition that medical professionals are often uneducated about. You write, “As Asherman syndrome is a rare illness, patients have little choice but to manage their own care, as doctors are often inexperienced with the condition.” It seems like the absence of medical knowledge is an exigence for patients who are working to create their own knowledge and expertise. Can you say more about that?
SC: Throughout my research, I’ve been surprised by how much the perception of a “rare” illness translates into the dismissal of patient experience. For instance, many of the participants in this study were told by medical providers that they couldn’t possibly have Asherman syndrome, because it’s “too rare.” One healthcare provider that I cite in this article states that in their training as an infertility specialist, they were taught that they could expect to treat less than five patients with Asherman syndrome throughout their entire career (p. 407). Instead, that healthcare provider has treated more than 200 patients with Asherman syndrome. So, I agree that it creates a real exigence for patients when they have a medical procedure like a dilation and curettage (D&C) and immediately experience symptoms of Asherman syndrome, only to be dismissed by their healthcare providers. Fortunately for patients with Asherman syndrome, there are significant online support groups, like the International Asherman’s Association and the support group created by Asherman Syndrome Australia and New Zealand. These online groups provide updated links to current health research on Asherman syndrome that help patients advocate for a diagnosis and treatment. Although we often hear or read about misinformation in online support groups, these examples show that online support groups can also provide very positive interventions for patients who often can’t find support elsewhere. Unfortunately, there are many other rare illnesses that don’t have access to medical resources or online support groups, and that’s an extremely frustrating experience.
AR: I was so sorry to read of your experiences as a patient–the misinformation shared, the diagnostic delay, not to mention the heartbreak of your miscarriage. Thank you for sharing your story in this piece. Although this piece is focused on the process by which patients develop and share expertise, I’m wondering whether you’ve thought about medical expertise (or lack thereof) as a rhetorical problem? For example, you explain how doctors are often trained with misinformation about Asherman syndrome. Do you see any potential avenues for “untraining” or “reeducating” professionals so that patients can be provided with more accurate information than what you were provided with?
SC: I was teaching a Science Writing class last semester, and during the course we read the book Ignorance: How it Drives Science by Stuart Firestein. In Chapter 2, Firestein talks about the problem that can occur with scientific textbooks: once a fact or statistic becomes published in a prominent textbook, that fact can be circulated for decades. The problem occurs when that statistic becomes rigid to the point that we stop questioning it or updating it (p. 28). Firestein’s book reminded me of a statistic that often gets repeated about Asherman syndrome, which is that the likelihood of developing Asherman syndrome after a D&C is roughly 1%. I was given that statistic before my D&C procedure, and six out of ten of my interview participants were given the same figure. However, when I tried to research where that statistic came from, I could only find one article—from 1964! Instead, more recent medical literature shows that the occurrence of Asherman syndrome after D&C, on average, is closer to 19.1% and is higher in the case of missed miscarriage (30%) or postpartum D&C (40%) (Hooker et al., 2014). It can be really shocking to patients with Asherman syndrome that the 1% statistic is still being reported by healthcare providers, even in the face of more recent medical research. As far as “untraining” or “retraining,” I wish I had a good answer! However, I love how the field of RHM encourages us not to accept a statistic only at face value. If we can continue to be curious, ask questions, and look a bit deeper, we can often become more effective problem solvers, and those are excellent qualities in future healthcare professionals and researchers!
AR: I appreciated your argument that patients in the online Asherman community found that the information provided there was “complementary” rather than “oppositional” to medical information. It strikes me that researchers can be too quick to label patients in these spaces as “resistant” or “noncompliant.” Can you talk a little bit about how rhetorical research, in particular, is well-prepared to capture this more nuanced observation?
SC: One aspect of this project that I found fascinating was how patients could be perceived as “resistant” or “noncompliant” by certain healthcare providers, but as trusting and helpful by different healthcare providers. For example, patients who develop Asherman syndrome after a D&C often choose to leave the medical practice or provider who performed their procedure. Understandably, patients lose trust in these healthcare providers if they weren’t informed about the risks of Asherman syndrome during the informed consent process, or if they experienced delays in diagnosis or treatment after developing symptoms. From these healthcare providers’ perspectives, these patients may appear “resistant” or “noncompliant” when they leave or switch providers. However, as the patients in this project show, patients with Asherman syndrome are often transferring this care to providers that they believe will be more knowledgeable about Asherman syndrome and empathetic with their lived experiences. One of my favorite parts of this project are the ways that patients describe developing trusting relationships with Asherman specialists. What’s more, Asherman specialists also describe these patients as “well informed and motivated” and their interactions with them as “partnerships with a high level of mutual respect” (p. 425). In particular, I think rhetorical research is well-positioned to interrogate how these successful partnerships form and how this trust develops, which is an exciting area of future research!
AR: In your conclusion, you emphasize that patient experiences with Asherman syndrome are varied and diverse; in other words, patients’ embodied experiences can differ greatly. In such situations, providing each individual patient with specific and appropriate medical information seems challenging, perhaps even a Herculean task in our current medical system. In an ideal world, what kinds of health literacy support might be available to patients (and not necessarily just AS patients)? Who might be best positioned to provide this support?
SC: It would absolutely be difficult, if not impossible, for healthcare providers to be able to provide specific recommendations that account for all the embodied experiences of patients. However, patients often emphasize that they receive “one size fits all” advice from healthcare providers, only to find that most of our bodies don’t fit within these standardized norms. In the most trusting relationships between patients and Asherman specialists, these healthcare providers often provide the “why” behind their recommendations. For example, why they believe this recommendation is the best choice for this patient in this circumstance, based on the research available. These healthcare providers also often emphasize the inherent riskiness in any of their recommendations: the procedure may fail, the scarring may reform, the medication may have side effects, the IVF may not be successful. These types of recommendations can help prevent stigma and shame for patients later, if the recommended treatment isn’t successful. Rather than blaming themselves for the lack of success, patients instead see failure or setbacks as a part of the process. However, while trusting patient/provider relationships are immensely useful to patient experiences, I also believe that online support groups can help fill the gaps with information that healthcare providers can’t provide, such as what it’s like to live with any condition. It’s not a perfect solution, but I believe that online support groups can gather and provide links to updated health research and can also provide a place to talk about symptoms, side effects, and the experiences of living with illness to help patients make more informed decisions.
Be the first to reply