I recently published my research on Evidence-based Medicine and the Limits of Standardization in Research in the Sociology of Health Care. Because I am a huge proponent for public sociology, whenever my work ends up behind a paywall, I like to provide an open access summary of that work that is free for anyone to access. Here, I share some highlights from the publication for those who either don’t have access or prefer not to read the full article. If you would like a copy of the published article, please feel free to reach out at firstname.lastname@example.org for a copy!
The Case of Pelvic Pain Care
Pelvic pain is a condition I’ve spent over three years researching from a sociological perspective. It provides an important case for evaluating evidence-based medicine for a few reasons. First, pain has a long and complicated history in medicine due to its subjective nature. In other words, medicine has no reliable, objective measures pain and therefore relies on subjective reports from patients. That means pain is particularly vulnerable to assumptions related to patient characteristics like gender, race, and socioeconomic status (SES).
Second, pelvic pain is notorious for being boiled down to a “women’s issue.” That means it suffers from the same lack of research as many conditions primarily impacting women. You can read more about women’s health research and the desperate need for more of it our article “Investing in Women’s Health Research Drives Positive ROI,” which features the sociological work of Dr. Chloe E. Bird.
Lastly, pelvic pain often falls within the category of sexual and reproductive health, another notoriously understudied area of medicine. While there are many causes of pelvic pain that have less to do with sexual and reproductive anatomy and more to do with the urological, gastrointestinal, and musculoskeletal systems, the assumption that pelvic pain is a sexual and reproductive issue remains.
What is Evidence-based Medicine?
Sociologists discuss evidence-based medicine as a biomedical paradigm, which basically means a way of practicing medicine based on a certain set of assumptions. One of those assumptions important to my research is the assumption that objective evidence for diagnosis is readily availably. When it comes to pelvic pain, however, that objective evidence is rarely available, which means evidence-based medicine may be difficult to adhere to when it comes to pelvic pain and similar conditions.
In the 1990’s medicine was scrutinized for its varying practice patterns, undermining the field’s credibility and introducing concerns about unnecessary medical expenses. These social conditions created the perfect storm for introducing evidence-based medicine. Sociologists often discuss this shift to evidence-based medicine as a “a social movement aimed to strengthen the scientific base of health care and determine the effectiveness of clinical interventions.” In this way, we can think of evidence-based medicine as not only a shift in how medicine was practiced, but a shift in our cultural and social understanding of medicine and health care.
What is Standardization in the Sociology of Health Care?
When practicing evidence-based medicine, we often see standardized guidelines for diagnosis and treatment. Standardization in health care refers to the tendency to standardize evidence from medical research on certain bodies to all bodies, regardless of important differences. As a medical paradigm, evidence-based medicine not only embraces this standardization, but relies on it to support its assumptions and goals.
When we standardize medical care based on research that did not include female bodies or bodies from marginalized racial groups, we treat all patients as if their bodies are white and male. This practice introduces a whole slew of issues when it comes to women’s health and the health of Black and Brown bodies. My research—summarized below—investigates how these issues come about, what they mean for patients with pelvic pain, and how we might approach health care differently through new and improved biomedical paradigms to mitigate those issues.
Summary of the Research
I approached my research using qualitative methods that included ethnographic observations at medical conferences and qualitative interviews with providers. In the end, I attended two medical conferences—one specific to pelvic pain and one specific to OBGYN—and interviewed 17 providers, including 11 physicians specializing in OBGYN and pelvic pain, five physical therapists, and one nurse practitioner.
Analyzing the Data
To analyze my qualitative data, I utilized a method known as critical discourse analysis. Critical discourse analysis is a method used to unpack discourse from a critical perspective that emphasizes the role of power structures in that discourse. In other words, I looked for ways in which evidence-based medicine, as a biomedical paradigm, exerted power over providers and their abilities to appropriately treat their pelvic pain patients.
What I found through my analysis was a process in which patients are pigeonholed into endometriosis diagnoses due to standard guidelines for pelvic pain assessment in OBGYN medicine. Endometriosis is a progressive condition where tissue similar to the uterine lining that accumulates in female bodies throughout their menstrual cycles grows outside of the uterus, often attaching itself to other organs and systems.
Pigeonholing pelvic pain patients into endometriosis diagnoses is an easy route for providers to take because it often—though not always—provides tangible evidence. The standard procedure for diagnosing and treating endometriosis is laparoscopy, a minimally invasive surgical technique that allows physicians to look for evidence of endometrial tissue and remove it. While this is the standard, many pelvic pain specialists I interviewed told me surgery only helps sometimes, while other times it can make things worse and exacerbate a patient’s pain. Other specialists also shared how often unnecessary surgeries take place, all due to the idea that female pelvic pain always equates to endometriosis.
While endometriosis is a common cause of pelvic pain, many other causes exist. And when providers are trained to only look for one condition in patients presenting with pelvic pain, those other causes become overlooked, ignored, undiagnosed, and untreated. Some of those causes include conditions of the gastrointestinal track such as irritable bowel syndrome, nerve conditions such as pudendal neuralgia, and musculoskeletal conditions such as pelvic floor dysfunction. Each of these conditions easily go undetected when providers are trained to turn their medical gaze toward endometriosis.
A Subjective Solution
Because pain is a subjective experience that cannot yet be measured objectively, an alternative approach to diagnosing and treating pelvic pain and similarly misunderstood pain conditions is necessary. My data presented two outlier cases that provided important examples of how we can subjectively assess pelvic pain by embracing the power of narrative. Narrative medicine is something that health care researchers have been writing about for decades, yet it still has not made its way into mainstream medical practice.
One outlier example of embracing subjectivity and narrative in my data was a conference session on racial disparities on maternal mortality in the US. It is well known among medical professionals in the US that Black mothers are four times more likely to die during childbirth than their white counterparts. One solution presented in the conference session was talking patients at their word, for—as the session moderator said—”there [are] so many things that only a woman in labor can tell you.”
Taking patients at their word and understanding their experiences as evidence provides a fruitful path forward for pain patients who more often than not have no tangible evidence to show for their pain. When we instead embrace the patient’s narrative through recognizing their subjective experiences as important evidence, we can move past the limits that standardization in health care introduces for pain patients.
Toward A Sociology of Health Care
I hope the biggest take away from this research is that a sociology of health care is vital—and not just theoretically, but also in practice. The research I discuss here may focus on theoretical understandings of biomedical paradigms, but the evidence I present also provides practical advice for improving pain medicine in the US.
Pain patients—especially women and those marginalized by their race—are constantly fighting for providers to recognize their pain as real and worthy of care. If we can start listening to what patients are saying, rather than focusing on what their bodies are not telling us, we might finally take step in the direction toward healing pain patients instead of pigeonholing them into diagnoses that are either not accurate or do not capture their full experience.