At first, it seemed like just an odd interaction, an anecdote for the researchers to put in their field notes.
They were observing different ways of structuring care for people living with HIV, to ultimately see what model had the best outcomes. But in one interview, a doctor told them that people who ask for Pre-Exposure Prophylaxis (PrEP), which reduces the risk of contracting HIV, are “stupid.” He linked seeking PrEP with promiscuity and unprotected sex, and noted that another provider at the site outright refused to prescribe PrEP because it promoted sex.
“We were surprised, and we put it in our fieldnotes as ‘just an anecdote,’” says Dr. Gemmae Fix, an applied medical anthropologist and research assistant professor of health law, policy & management at Boston University School of Public Health (BUSPH). “But as we began to go to other sites, we heard this real variation in how patients were talked about.” Eventually, Dr. Fix and her colleagues realized the different structures of care might have something to do with it.
The resulting study found HIV care providers who mainly worked alone were more likely to think about patients’ keeping up on their antiretroviral therapy (ART) and other care as a personal responsibility, and subsequently characterize patients as “good” and “behaving” or as “bad,” “flakey,” “stupid,” or even “sociopaths.” In contrast, providers who worked in multidisciplinary teams were more likely to describe patients in their life context, and consider larger factors such as housing instability and relationship violence. The study was published in Patient Education and Counseling, with Dr. Fix as the lead author and Dr. Barbara Bokhour, associate professor of health law, policy & management at BUSPH, as senior author.