I have on-going research projects exploring patient illness experience and health outcomes, empathy in clinical interactions, and health management among emerging adults.
The patients, providers, and clinic staff I've worked with are truly amazing people, and I hope they find interesting the results they contributed to, some of which are summarized below:
The patients, providers, and clinic staff I've worked with are truly amazing people, and I hope they find interesting the results they contributed to, some of which are summarized below:
How does access to online health information shape clinical interactions?
In America, currently there is a strong cultural assumption that knowledge equals power. For this reason, public media often admonishes patients to gather information and become informed consumers and partners in their health care. I was the PI on a project designed to explore to what extent patients actually do seek medical information, how any such information shapes their illness experience, and to what extent it effects their clinical interactions (funded by NSF Advance Fellows and the MS Foundation). This was a team research project dependent on the collaboration of rheumatology and neurology physicians and their patients who generously spoke with myself and my co-fieldworkers --especially Drs. R. Jean Cadigan and Cynthia Strathmann -- and allowed recordings of clinical interactions.
Our findings, published in The Neurologist (2008) and in Arthritis Care and Research (2008), show that patients go online for information significantly more than they admit to their care providers, and care providers might find it useful to simply ask patients about information found online to help prompt patient questions about diagnosis and treatment.
Our findings, published in The Neurologist (2008) and in Arthritis Care and Research (2008), show that patients go online for information significantly more than they admit to their care providers, and care providers might find it useful to simply ask patients about information found online to help prompt patient questions about diagnosis and treatment.
How does medical evidence influence physician decision making?
In this project, we were particularly interested in how physicians use information -- both knowledge from their own local practice and knowledge from the published, evidence-based literature -- when making clinical decisions. I was a member of a larger team lead by Naihua Duan, Richard Kravitz, and Tom Weisner, in which we conducted interviews and focus groups with a wide range of physicians to better understand physician decision making. Using a film, Harnessing Clinical Evidence (produced by Saskia Subramanian, directed and edited by Vivian Umino; from which the photo above was taken) designed to stimulate discussion, we also explored ideas for how physicians might more easily access and legitimately use local practice knowledge in combination with evidence based research literature to make the best possible decisions for the patient at hand.
We found that physicians couple evidence-based medicine with local clinical experience, and indeed, the more experienced a physician is, the more they rely on their experience, which is informed by the evidence-based research evidence and applied to nuances of the local clinic or the patient at hand (Journal of Evaluation in Clinical Experience, 2008).
We found that physicians couple evidence-based medicine with local clinical experience, and indeed, the more experienced a physician is, the more they rely on their experience, which is informed by the evidence-based research evidence and applied to nuances of the local clinic or the patient at hand (Journal of Evaluation in Clinical Experience, 2008).
The politics and work of waiting rooms
Anthropological research is inductive and unafraid of complexity. Indeed, we revel in complexity and the richness of human behavior and meaning that emerges within the intricate nuances of local context. Thus, while doing focused research on specific questions anthropologists often also do ethnographic research to understand how the entire context frames or affects the specific variables under study. Thus while collaborating with patients and doctors to understand online information and clinical interactions, I and my colleagues, especially Cynthia Strathmann spent hundreds of hours in waiting rooms, waiting for and meeting with patients, chatting with reception staff, feeling the stillness of time, and listening to anxiety of patients late for appointments. We had approval to do ethnographic observations in waiting rooms, but had expected it to only be the background for the action that happened between patients and their doctors.
Instead we found that a lot of important action goes on in waiting rooms. Reception staff do considerably more than make appointments and confirm insurance -- they are responsible for managing patients' emotions, including intense anxiety and anger, to ensure the efficient flow of clinical appointments (Medical Anthropology, 2009). We also found that the architectural design of clinical space affects the ways patients interact with reception staff: efficiently designed clinics were more likely to host episodes of patient rudeness towards reception staff than clinics in which patients would interact with the same staff multiple times over the course of the appointment (Human Organization, 2008).
Instead we found that a lot of important action goes on in waiting rooms. Reception staff do considerably more than make appointments and confirm insurance -- they are responsible for managing patients' emotions, including intense anxiety and anger, to ensure the efficient flow of clinical appointments (Medical Anthropology, 2009). We also found that the architectural design of clinical space affects the ways patients interact with reception staff: efficiently designed clinics were more likely to host episodes of patient rudeness towards reception staff than clinics in which patients would interact with the same staff multiple times over the course of the appointment (Human Organization, 2008).
How do people cope with chronic illness?
Listening to dozens and dozens of patients' stories about their illnesses, each unique, I began to notice patterns in how people talked about their everyday experiences, what they highlighted as primary concerns, and how well they thought they were doing. In this data set, patients had rheumatological or neurological disorders, some of which are signaled by rashes or misshapen joints, but many of which were invisible without blood tests or an experienced medical eye. And so I explored how patients coped, looking to see if there was a way I could understand why some patients seemed to be doing better than others.
I found that patients' ability to cope with their illness seemed to be related to how legitimated they felt in their suffering. Visibility was one of the key variables. Patients whose flares in pain or disease were accompanied by swollen joints, rashes, fevers, or difficulties breathing were given leeway by family, friends and co-workers who could see the illness. But for those whose disease was invisible, they always felt that people were looking at them accusingly, as if they were lazy or cheating somehow, as if they didn't need the handicapped parking sticker. The other key variable was whether or not the patient could engage in activities that they and society identified as productive. So if one was productive, people could pass as normal or, if they had visible diseases, as heros. I call this the John Wayne model, indexing disease as something to be bravely worked through or controlled. When patients could follow this approach they experienced social approval, but if the disease was incapacitating and invisible, patients suffered all the more. In short, I make the argument (in the 2010 American Ethnologist article) that the American cultural model that associates human value with productivity is beneficial to many patients who are not incapacitated by illness or whose disease is visible, but for those with invisible and incapacitating disease, the ideal of productivity may actually make their suffering worse.
I found that patients' ability to cope with their illness seemed to be related to how legitimated they felt in their suffering. Visibility was one of the key variables. Patients whose flares in pain or disease were accompanied by swollen joints, rashes, fevers, or difficulties breathing were given leeway by family, friends and co-workers who could see the illness. But for those whose disease was invisible, they always felt that people were looking at them accusingly, as if they were lazy or cheating somehow, as if they didn't need the handicapped parking sticker. The other key variable was whether or not the patient could engage in activities that they and society identified as productive. So if one was productive, people could pass as normal or, if they had visible diseases, as heros. I call this the John Wayne model, indexing disease as something to be bravely worked through or controlled. When patients could follow this approach they experienced social approval, but if the disease was incapacitating and invisible, patients suffered all the more. In short, I make the argument (in the 2010 American Ethnologist article) that the American cultural model that associates human value with productivity is beneficial to many patients who are not incapacitated by illness or whose disease is visible, but for those with invisible and incapacitating disease, the ideal of productivity may actually make their suffering worse.
