Humanities Institute

Health & Humanities Pop-Up Institute Hosts Lecturers Across Disciplines

Wed, July 25, 2018
Health & Humanities Pop-Up Institute Hosts Lecturers Across Disciplines
Jonathan Metzl at the PUI Symposium

By Sarah Schuster

 

What makes a healthy community? How do we include the humanities in medicine--and why is it important?

The Humanities Institute and Dell Medical School aimed to answer these questions and more at the Health and Humanities Pop-Up Institute (PUI). The PUI convened scholars from across nine of UT-Austin’s schools and colleges to discuss the topic of health, healing, and the humanities during the month of May, providing scholars an opportunity to learn, teach, and discuss new ways of collaborating across disciplines through seminars and workshops.

These seminars were organized around three major fields of inquiry, including Narrative Medicine/Narratives of Medicine, Humanistic Approaches to Health Equity and Justice, and Community Practice.

The PUI hosted four public lectures from leading scholars in medicine, psychology, and sociology  to consider these subjects, and to further encourage collaboration and interdisciplinary research.

May 9th marked the PUI’s first public lecture, featuring Dr. Vanessa Grubbs, Associate Professor of Medicine in the Division of Nephrology at the University of California, San Francisco.

 

Dr. Vanessa Grubbs.

 

Dr. Grubbs’ talk, entitled “Are We Still Worlds Apart?”:  Racial and Ethnic Disparities in Kidney Transplantation,” focused on persistent disparities in nephrology, from dialysis to transplantation. Dr. Grubbs discussed not only the gap in care between patients of color and White patients, but the increased incidence of kidney disease in African-American patients.

Interwoven through her discussion was her own personal story. Reading from her book Hundreds of Interlaced Fingers, Dr. Grubbs related her husband Robert’s experiences with dialysis, the wait list, and his successful transplantation from a donor--Dr. Grubbs herself.

Despite the fact that 1 in 3 patients awaiting transplant are African Americans, with White patients making up another third of the candidates, 68% of all deceased donor transplants go to White patients, along with 71% of living donor transplants. And with 13 people dying on the waitlist everyday, the stakes for patients with kidney disease are terribly high. 

Discussing both her patients’ struggles and her husband’s, Dr. Grubbs advocated for diminishing provider bias. She uncovered the racial disparities in measurements typically taken for granted, such as the Glomerular Filtration Rate (GFR), a measurement meant to calculate how well the kidneys are filtering blood in milimeters per minutes. 

What should be an objective measurement of kidney health, however, often results in disparity and diminished outcomes for patients of color. The equation was developed with adjustments both for gender and for race, assuming that African Americans supposedly possessed more muscle mass. But as Dr. Grubbs herself saw, this adjustment can be dangerously inaccurate for patients currently on dialysis, leading doctors to overestimate an African-American patient’s kidney health.

“People take it defensively when I say everyone has their own bias,” Dr. Grubbs admitted. But as she explained, medicine leaves room for unconscious bias and human error in diagnosis, even for those who might be aware of provider and patient bias.

Dr. Grubbs additionally stressed patient education, closing the gap between a healthcare provider’s knowledge and the patient’s knowledge of kidney disease. One major problem with transplantation and kidney disease is access, and racial disparities in who, precisely, can access not only the kidney transplantation waitlist, but healthy food, education, healthcare, and clean air.

 Dr. Grubbs fielded questions from Institute participants as well as students, some of whom related their own stories of the waitlist. Dr. Phil Barrish, Associate Director of the Humanities Institute, questioned the use of the GHR measurement in particular, noting the obvious problems with using an imperfect and potentially discriminatory measurement. 

“People don’t question it,” Dr. Grubbs responded. “We have been raised to believe race is about biology, but it is about how people have been treated in this country.”

Following Dr. Grubbs’s lecture, the Pop-Up Institute had a lunch and casual discussion with Dr. Grubbs. This session began with some remarks by Dr. Steve Steffensen of Dell Medical School regarding the goals of the PUI; Steve highlighted Dell Medical School’s commitment to a new kind of interdisciplinary healthcare, and his hope that the PUI would foster discussion centered on the school’s four “pillars:” “Clinical Care, Education, Research and Community Impact.” 

Following these comments, Dr. Grubbs discussed the writing courses she has taught, which she described as an attempt to “teach medical residents how to be better about advocacy across scenarios.” Dr. Grubbs informed the group that she encourages students to use their authority as physicians to lend credibility to their patients’ stories.

In discussing the writing process and fostering writing across disciplines, both PUI participants and Dr. Grubbs agreed the key to writing was to ignore perfectionism and to set reasonable expectations for oneself.

Dr. Grubbs jokingly related her own struggles with writing, noting that you probably shouldn’t base your writing habits off of Stephen King’s prolific 10,000 words a day, as she did. “It’s not supposed to be Pulitzer Prize-winning,” she said. “Think small, and don’t put too much pressure on yourself.”

More importantly Dr. Grubbs stressed the importance of a diversity of voices, from medicine and otherwise. As she put it,“writing is a way we can resist, and protest.”

Dr. Steffensen then asked Dr. Grubbs how she approaches sharing patient stories without infringing on their privacy, and the group discussed the importance of clear communication with patients and the significance of patient and community consent.

Dr. Grubbs commented on one of the most important kinds of stories she encounters with her patients, the stories that communities tell themselves about healthcare, saying she is “always amazed by the reasons people come up with for not doing things to improve health.”

Though the seminar moved to mulling over the realities of funding for writing projects in medical schools, the discussion kept moving back to the importance of stories and narrative for bridging the patient/physician divide, with Dr. Grubbs stressing the importance of listening to patients stories and “asking them what they think.”

Storytelling and writing were explicitly the theme of the next two lectures. On May 16th, Dr. James Pennebaker, Regents Centennial professor of liberal arts at the University of Texas at Austin, gave his talk, “Expressive Writing and Health: How Putting Upheavals into Words Can Affect Our Thoughts, Feelings, and Behaviors.”

Dr. James Pennebaker.

 

Dr. Pennebaker introduced expressive writing practices as a subject of vital interest to humanities researchers, medical professionals, and clinical psychologists because of their engagement with textual analysis, healthcare and well-being--and the things that “make people tick.”

In his first study of expressive writing, Dr. Pennebaker found that instructing students to write about a traumatic experience for fifteen minutes a day for four days led to a drop in visits to the student health clinic. 

There have now been as many as 1,500 follow-up studies on the health benefits of expressive writing since Dr. Pennebaker’s study in 1986.

These studies have found that its health benefits take a variety of forms, leading to increased rates of healing for physical wounds and increased immune system markers in blood drawn from patients participating in expressive writing. 

Expressive writing reveals what Dr. Pennebaker calls the “downstream effects” of trauma, by revealing all of the health problems brought about by experiences that have not been dealt with. He identifies its benefits with a variety of causes, including acknowledgment of the emotional strain of the trauma, and the “meaning-making” brought about by putting the events into words.

Dr. Pennebaker concluded by discussing his most recent work with the Linguistic Inquiry and Wordcount computer program (LIWC), which he is using to find the distinctive markers of a well-composed narrative. Using LIWC, Dr. Pennebaker will assess how casting traumatic experiences into the mold of a story helps patients, and how a particular kind of narrative can generates the most benefit for its writer.

The talk concluded with a lively question and answer session, where Dr. Pennebaker discussed a variety of individual studies of expressive writing and speculated with audience members on new areas where expressive writing could prove useful, such as with physicians writing about their experiences with patients.

After Dr. Pennebaker’s lecture, PUI participants further discussed his work over lunch. The discussion began with a focus on the physical evidence of the effects of expressive writing. Dr. Gloria González-López of the Sociology Department asked if there has been any work on the effects of the writing on the amygdala. Dr. Pennebaker shared that Dr. Matt Liebermann has done important work on the brain and expressive writing. Dr. Steve Steffensen added that the effects could be seen across the frontal cortex. 

The discussion then moved on to looking at more specifics of Dr. Pennebaker’s expressive writing experiments. Drawing on the institute’s theme of narrative, participants asked whether any of the writing prompts for his experiment requested that subjects construct a narrative.

Dr. Pennebaker responded that while he never used words like ‘narrative’ or ‘story’ he found that subjects tended to make stories, especially as they revisited their past experiences over the course of the experiment.

Building further on the institute’s themes, Dr. Keri Stephens of the Moody College of Communication asked if any of the experiments’ benefits could derive from the community built by sharing a space while thinking through traumatic experiences.

While Dr. Pennebaker didn’t speak to the direct effects of this shared space, he noted that the subjects writing about traumatic experiences would move to sit closer to one another over time, while control groups writing about mundane topics would stay spread out across the room. 

PUI participants discussed the wider implications and uses of expressive writing. The group debated if expressive writing was relevant to the #MeToo movement, concluding that it created a significant social space for acknowledging and narrativizing trauma.

Additionally, the group discussed the potential usefulness of applying the LIWC program to understanding physicians’ electronic records, and how the results of such a study could make it possible to envision more open-ended questions for records that would better present a patient's personal narrative and experience.

 

Dr. Annie Brewster.

 

Dr. Annie Brewster, founder and executive director of Health Story Collaborative in Cambridge, Massachusetts, asked participants how they could press stories into the practice and work of healing in her talk on May 21st:“Putting Stories to Work: Why and How Sharing Stories Promotes Health.” Dr. Brewster grounded her talk in being not only a healthcare provider, but in her words, a mother, patient, storyteller, and a “story-sharer.”

Diagnosed with multiple sclerosis in 2001, Dr. Brewster shared how her journey as a patient ultimately led her to founding the Health Story Collaborative, a non-profit that guides and empowers patients and providers to share stories of health and illness. 

The focus of Dr. Brewster’s talk was what she “believed about the healing power of stories,” the ways in which stories of illness helped her to reckon with her MS and how both hearing and telling stories has improved others’ lives.

According to Dr. Brewster, The Health Story Collaborative does not run on any particular methodology; rather, it provides patients and loved ones the opportunity to share their stories.

Though medicine and the humanities are often cordoned off as being more scientific or less scientific, they are far less dichotomous than one would think. Stories are relational acts, though Dr. Brewster implied that they should have certain features to be healing stories, or narratives that have the capacity to heal.

Dr. Brewster distinguished between eudiamonic ways of contending with trauma, i.e., deep exploration of the self and the active search of meaning in challenges, and hedonic, essentially means of regaining agency and actively avoiding more pain.

In creating more productive narratives, Dr. Brewster suggested that the most healing narratives include some aspect of agency, communion, and redemption, nnodding toward master narrative theories. 

Dr. Brewster provides written guides to her participants that ask questions meant to help them reflect on times they have had agency, or the things that could be redemptive as a means of guiding patients toward healthy narratives. Most of all, she emphasizes the need for participants to have control over their own story and how it is told.

During lunch, participants had an extensive discussion with Dr. Brewster about her work and its possible implications for health care.

The discussion began by addressing the  practicalities of Dr. Brewster’s work with Health Story Collaborative; Dr. Virginia Brown of Dell Medical School began the discussion by asking about the projects’ relationship to Institutional Review Boards. Dr. Brewster said they do not work with the IRB, but that the Collaborative regularly deals with privacy concerns, particularly in events where physicians also share their side of a story.

These practical and ethical issues were a recurring theme, as the group discussed how Dr. Brewster navigates positioning her work as that of a physician versus a recorder. Dr. Brewster de-emphasized her role as a physician in this space, saying that she thinks of herself primarily as a “guide” leading people to construct a more healthy relationship to their diagnoses.

The group also discussed the relationship between Health Story Collaborative’s process for leading people to narrativize their experiences and larger cultural contexts.

Dr. Suzanne Seriff  of the Anthropology department noted that Dr. Brewster’s approach recycles culturally specific ideas related to redemption and that the process might have limited success outside of specific cultures, while Dr. Phil Barrish questioned how the process deals with the ‘master narratives’ that Dr. Brewster alluded to in her presentation.

Dr. Brewster admitted that her process could have some limits with respect to diversity, and mentioned that they consider larger cultural narratives in their prompt questions for participants, but they do not necessarily probe the issues directly with participants.

The group also had a useful discussion of the relationship between authenticity and optimism in participant narratives. Dr. Brewster maintained that Health Story Collaborative is devoted to maintain “authenticity.”

She noted that she  would like to see work done on the relationship between “deep processing” and “owning the hard stuff,” on the one hand, and maintaining a positive perspective, on the other.

Finally, the group acknowledged Dr. Brewster’s work as yet another affirmation of the significance of narrative to health and health care, imagining an integration of stories like those that Dr. Brewster curates with physician electronic records. 

On May 30th, the PUI hosted a day-long symposium, featuring speakers and panels from across the Austin and UT community. Special guest and keynote speaker Dr. Jonathan Metzl of Vanderbilt University gave his lecture, “Structural Competency Five Years On: Tracking a New Medical Approach to Stigma and Inequality,” after a morning of enlightening community panels.

 

Dr. Jonathan Metzl.

 

Dr. Metzl discussed the work that led him to the concept of structural competency, as well as discussing the future he sees for the concept in health care.

He described structural competency as a way to move beyond the focus on the individual in cultural competency. In contrast, structural competency emphasizes the importance of understanding health and illness as they relate to social and historical structures.

In particular, Dr. Metzl emphasized the utility of structural competency as a means of understanding health as a socially defined term produced by cultural and political discourses, and as a way to probe how diseases become socially coded. 

In this regard he cited his 2010 book, The Protest Psychosis, on how schizophrenia became associated with black power protesters. Dr. Metzl argued that these cultural expectations are recreated everyday in a clinical setting, where doctors are at risk of encoding their biases in their diagnoses.

He argued that we are currently well-positioned to consider racism and social inequities  as “pathogens” affecting patient health, citing recent developments in epigenetics and neuroscience.

The final portion of Dr. Metzl’s lecture focused on the work being done in Vanderbilt University’s Medicine, Health and Society program, which he described as “a new kind of pre-med program.”

This program uses the concept of structural competency to organize its curriculum, by emphasizing the Humanities and Social Sciences alongside traditional science classes and encouraging student projects that engage directly with structural inequalities in the community--one such project being a program to provide grocery food trucks in food desert areas.

 

Audience members and PUI participants listen to Dr. Metzl’s lecture.

 

Dr. Metzl observed that evaluations of MHS students showed a much greater degree of competency and confidence with the cultural contexts of health care compared to a control group of students in a traditional Pre-Med program. 

Ultimately, Dr. Metzl’s talk advocated for embedding the theories and practices of structural competency into both the educational and professional medical spheres in order to improve patient outcomes and better understand the relationship between culture, history, society, and health.

Dr. Metzl’s talk was followed by a discussion with the audience. He received a wide range of questions, including questions about implementing structural competency in the profession and the role of the Humanities in his vision of a structure-centered health education system. 

Dr. Metzl responded that a key part of encouraging practitioners to think structurally is to create a framework for thinking outside the individual clinician’s work by thinking through the relationship between medicine and society. In regards to the Humanities, he noted that the utility of the Humanities in training medical professionals is a difficult issue, and that he suggests looking to the Humanities as a specific set of skills that help “create things in a framework,” rather than simply as a means to create empathic relationships.

After lunch, the symposium reconvened with Dr. Metzl for a panel discussion. Dr. Pauline Strong, director of the Humanities Institute, began the discussion by asking how the structures of structural competency relate to ideas from poststructural thought. Dr. Metzl responded that issues related to race and ethnicity had become “too discursive” and that structural competency was a move “back to the real world” by focusing on the effects of racial and social structures. 

Dr. Metzl stressed the importance of thinking beyond the individual and the sympathy between physician and patient encouraged by the cultural competency model in order to challenge  systems of inequity.

Dr. Metzl suggested that a key part of this goal was admitting that structural competency was an unattainable goal and, so, capable of continuous critique. 

The conversation took a pragmatic turn as Dr. Metzl receiving questions about how to deal with the communication divide between different cultures’ understanding of disease, and how to track the effects of structural competency education on physicians.

Dr. Metzl stressed that miscommunications about disease are not exclusively cross-cultural but can also be interpersonal. He related the problem to one encountered by Vanderbilt students attempting to supply groceries in an area food desert through a “mobile market.”

The students had limited success at the outset, finding that residents were reluctant to buy the foods they offered. They found they had to approach the problem as an “exercise in absolute humility,” collaborating with community members to find the common ground between their goals. 

“The idea of a collaboration was much more in line with our goals,” Dr. Metzl stated, providing the project with more community input and cooperation. 

In terms of his students’ outcomes as physicians, Dr. Metzl stressed using a non-traditional criteria based on assessing the students’ specialities and their political activism, rather than exclusively judging them by patient outcomes.

The conversation then shifted to Dr. Metzl’s current work on gun policy in the United States. Dr. Metzl discussed how gun violence can also be looked at through a structural lens, noting that media narratives surrounding shootings often do not acknowledge the structures that facilitate access to firearms. 

Finally, the conversation turned to the benefits of structural competency as a replacement for cultural competency and structural competency’s capacity to acknowledge all of the social distinctions a physician might encounter in their work.

Dr. Metzl stressed that he hopes to see structural competency take a more intersectional form than cultural competency by acknowledging the overlaps between seemingly separate groups. 

He also stressed that structural competency’s strength does not only lie in understanding a patient’s background but understanding the systems surrounding the patient in order to provide effective treatment, saying “it doesn’t matter how sensitive a doctor is if they can’t intervene.”

The symposium concluded with a series of panels titled “The Promise of the Health Humanities: Research, Teaching, Practice and Engagement.” The panels discussed Interdisciplinary Research, moderated by Dr. Pauline Strong; Clinical Practice, moderated by Dr. David Ring; Teaching and Curricular Activities, moderated by Dr. Phil Barrish, and Community Engagment and Impact, moderated by Dr. Chelsi West Ohueri.

These panels, the culmination of the PUI’s research paper working groups, were introduced by Dr. Steve Steffensen as a “report on the Pop-Up Institute” meant to harness the unique mission of Dell Medical School with UT-Austin’s broad interdisciplinary resources. 

With well-regarded departments and schools across the disciplines, scholars at UT have the opportunity to collaborate and “explore an ongoing research network,” begun in large part by the PUI itself. The formal concept papers, Dr. Barrish noted at the Symposium’s conclusion, will be available on the Humanities Institute website.

 

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