Conducting research in vulnerable populations and historically marginalized groups can be a delicate process, and because of this, safeguards intended to protect these exact groups can in some ways hinder the research process. When do the well-intentioned hurdles to conducting research in vulnerable groups actually impede the research itself and consequently, thorough exploration of health disparities?
I was set on doing a research project of my choosing during my first two years of medical school that would focus on health disparities in certain populations. By the end of my first year I had decided to pursue a qualitative project that would involve interviewing lesbian, gay, bisexual, transgender or queer (LGBTQ) or other non-heteronormative or non-binary patients in the local area about their experiences with physicians in an attempt to look at the patient-physician relationship from this minority group’s perspective. I was excited to approach the research in an open-ended qualitative way through interviews, narratives and letting the patient describe a personal experience in their own words.
The reactions to this approach were challenging. The review board challenged my research mentors and me on many occasions about the rigor of the project in ways that made approval difficult. We encountered pushback related to using a qualitative approach, and at one point I was asked why I could not just make the interviews more quantitative. I became well aware of these attempts to change my research questions so that they could be answered without words, so that the answers could be quantified and categorized to fit a statistical model. In some ways, these were attempts at dwindling patients’ experiences down into numbers, averages, scales and the like. This led me to question why there is this established resistance to qualitative work. Is it because qualitative research is viewed as too subjective or, as my critics pointed out, “too soft” and not quite “scientific” enough and not deserving of medical funding?
Not only was there questioning of the methodology but also hesitancy towards the subject matter. Would asking LGBTQ or gender-variant individuals questions be too risky? Would there be enough protections in place for stress-induced harm? Would there be sufficient confidentiality? The unrelenting questions from the institutional review board felt like an attempt to dissuade research involving this population in order to preempt any political incorrectness and “controversy.” Regardless of the intentions, the result of such tiptoeing is a huge disservice to marginalized communities. Through ignorance and avoidance, privileged groups of people can ultimately hamper attempts to explore health disparities in a population of people where so much has yet to be elucidated.
After many months of trying to describe this type of research methodology to medical professionals as “qualitative” and “exploratory,” adjectives often reserved for social science research, I was able to begin the project. Despite having the approval to proceed, the question of relevance persisted: Why is it important to collect the narratives of marginalized groups? How can this be useful to medicine? Is there a place for qualitative research in medicine?
By listening to patient perspectives, we are better able to gain an understanding about disparities in care and treatment and where improvements can be made in regards to patient-physician relationships in diverse populations. Although cultural competency is expected of and taught to physicians in training, cultural sensitivity towards LGBTQ patients and many other underrepresented groups is still lacking. Through my project, I learned that physicians taking a “neutral” approach tend to reinforce heteronormative and gender-normative assumptions. With qualitative research, it may be possible to address the different elements of ignorance on the part of the provider if we listen to patients’ narratives and then explore the gaps in knowledge.
Another important consideration is the patient’s role in the decision-making process. Interviewing patients can help us understand why patients do or do not participate in their health care in a proactive way. Shared decision-making is important in all patient-physician relationships, but it is not feasible when patients are unwilling to discuss their values, preferences and other personal details with their physicians. This is something physicians may not be aware of without thoroughly listening to and exploring patients’ perspectives. It can be beneficial to explore why certain patients continue to feel dissatisfied with the relationships they have with their physicians and at times even feel mistreated by their health care providers.
It is a truly unique experience to have conversations with people one-on-one about their experiences with physicians and other health care providers. I found myself privy to personal stories of challenges and discrimination these patients faced, but also to stories about developing comforting and secure relationships with doctors over many years. I could hear the emotions and strength of meaning behind their words and their desire to share their lives using their own voices. Through these interviews, it was easy to identify many barriers patients faced when choosing to develop a trusting relationship with a physician. Themes ranged from blatant discrimination due to orientation, race or HIV status to more subtle microaggressions. For gender minority patients, mis-gendering or using incorrect pronouns was a common theme.
Those of us pursuing roles in the medical establishment often assume we know what is important to the patient when in reality this assumption is often at odds with the patient’s own experience. How the patient really feels about the physician or about medical decision-making is often left unsaid. Without these perspectives, the physician may not consider asking certain questions or exploring topics that the patient may prioritize. Unfortunately, many specialties in medicine still require an inconvenient amount of persuasion regarding the importance of qualitative research. In my experience, not only has it been a challenge getting approval for a qualitative look at sexual and gender minority health narratives, it has also been troubling that there is pervasive resistance against — or perhaps ignorance of — the importance of qualitative methods as an important tool for understanding a population and its specific needs in the people’s own words.