When Jenny McDonnell, assistant professor of health management and policy in the College of Public Health, was in her 20s, her mother became seriously ill. As a first-generation college student from a small, rural town in Georgia, McDonnell suddenly found herself navigating a complex health care system and struggling to understand what questions to ask her mother's doctors about her care.

“Around that same time, I took my first sociology class, which taught me about the norms of professional cultures and medical institutions and this idea of ideal patienthood, of being the good patient, and what that means,” she says.

Together, those experiences sparked her interest in how perceptions of patients affect health care decisions. Today, McDonnell, a CSSI researcher affiliate, studies the often-overlooked factors that influence kidney transplant referral decisions, including how providers interpret patient information. These decisions have significant consequences for who ultimately receives a lifesaving transplant.

Through interviews with dialysis care providers, she found that transplant center backlogs and patient medical conditions that make transplantation unsafe influenced referral decisions. However, providers also considered patients’ behaviors when assessing whether a patient could successfully manage a kidney transplant.

“It's that sense-making process that my work investigates—how providers ascribe meaning to a behavior and whether that meaning varies based on other patient characteristics like gender, race, or age,” she says. “Kidneys are a scarce resource, so I look at how evaluation processes might affect access to transplants in ways that are inequitable.”

As McDonnell worked to publish these findings, she participated in CSSI's Write on Target, which provided a distraction-free space at CSSI to polish one of her dissertation chapters for publication.

“Finding the willpower to revise and submit this chapter has honestly felt like a Herculean feat, and I credit Write on Target with helping me cross that finish line.”

Nonadherence as a barrier to kidney transplant

McDonnell is exploring nonadherence, a concept that emerged from her interviews with both providers and dialysis patients living with end-stage kidney disease.

“What came up in every single interview was that patients who were perceived as nonadherent would not be considered good candidates and, therefore, might be delayed, discouraged, or denied referral,” she says.

In her study, patients described being labeled nonadherent in medical records for asking questions, seeking more information, or challenging treatment recommendations. Providers described delaying referrals until patients demonstrated that they would improve their health behaviors or provided assurance that they would take good care of their new kidney.

“A standout finding for me was that there is no agreed-upon definition of nonadherence,” she says. “It's the providers' interpretations of that behavior. For example, when a patient refuses medication or requests an alternative therapy, does the provider see this as engagement in care decisions or as failure to follow medical advice?" 

Most patients who reported being labeled nonadherent for behaviors they considered forms of self-advocacy were socioeconomically disadvantaged women with a high school education or less. 

“I think the big takeaway from this is that the same behavior could be interpreted as non-adherence for one patient but not another—and this might systematically vary by something like race, gender, or socioeconomic status,” McDonnell says.

To better understand what is being measured during adherence assessments, McDonnell is writing a grant proposal to use natural language processing to analyze providers' narrative notes alongside patients’ clinical data.

She ultimately wants to help both patients and providers as they navigate difficult decisions about patient care.

“It's a confusing time for a lot of patients, especially when you don't grow up in a professional culture, because there's a certain way to talk and ask questions. My family is not unique in this experience.”

Visit our website to learn more about Write on Target.

To receive emails about CSSI news and opportunities in support of social science research, subscribe here.