Data and Narrative

Module Overview

 This module takes up the relationship between data and narrative for health and healthcare. Traditionally, data is seen as objective and narrative subjective; data is presented as offering a big-picture account, while narrative is particular and individual. Building on the work of experts in this field, particularly Kirsten Ostherr’s work at this intersection, this module invites students to think differently about the relationship between narrative and data, particularly for the digital, data-driven future of healthcare.

The module begins by introducing students to classic texts on the role of narrative in health and healthcare, asking them to trace the development of thinking in this field from its origins in the 1980s to recent innovations that include communally produced narrative strategies like crowdsourcing. The second week troubles the traditional dichotomy between data and narrative with particular attention to the special challenges posed by digital health and the datafication of healthcare.

Day 1: Narrative

  • Watch the introductory video here or read text available here.
  • Kleinman, Arthur. The illness narratives: Suffering, healing, and the human condition. [1988] Basic books, 2020. Read the introduction.
  • Charon, Rita. “Narrative medicine: a model for empathy, reflection, profession, and trust.” Jama 286, no. 15 (2001): 1897-1902.
  • Watch first episode of Diagnosis on Netflix: Season 1, Episode 1. “Detective Work.” Created by The New York Times. Aired August 16, 2019 on Netflix. https://www.netflix.com/title/80201543

Assignment: write 500 words reflecting on the role of narrative in healthcare and healthcare practitioners use it. Whose formulation appeals to you most—Kleinman, Charon, or Sanders—and why? Alternatively, these three pieces, all featuring the thinking of physicians with training in the humanities, represent very different moments in the development of thinking about the role of narrative in healthcare, each roughly 15 years apart. How might you trace the progression of thinking about what narrative does/can do for healthcare?

Day 2: Narrative vs. Data

Exercise:

In class, screen the segment of Diagnosis where people submit videos about Angel’s case. Ask students to take notes as they rewatch this material, paying special attention to the words people use to talk about the case, how they address their audience, and who gets to contribute to the narrative, and how the online, crowdsourced format generally shapes the developing story of Angel’s diagnosis.

10-minute free write: reflect on the differences between narratives produced in a traditional dyad (that is to say, between doctor and patient or from patient against doctor) and those produced by digital communities. How does the internet crowdsourcing approach used by Sanders change the way stories are structured or made? Can you see that difference reflected in the way that Sanders talks about narrative in the conversation you watched for today’s class?

Day 3: Data and Narrative, Part I

Assignment: Write 500 words about one of the following two prompts:

  • Again, the first two readings for today track a developing conversation. How might you describe the difference between the relationship Bleakley traces between data and narrative and the one offered by Ostherr? In what ways has, do you think, the “datafication” of healthcare since about 2010 (described by Ostherr) prompted or demanded new understandings of this relationship?
  • Compare Rebecca Munson’s account of her individual quest to become data to acquire better treatment with Ed Yong’s description of how our interpretation of data is necessarily entangled in cultural narratives. Taken together, what might these essays tell you about the relationship between data and narrative?

Day 4: Data and Narrative, Part II

  • Watch full video of Kirsten Ostherr’s lecture “Digital Health Humanities: A Critical Intervention for a ‘Data-Driven’ Pandemic.”
  • Catherine D’Ignazio and Lauren F. Klein. “Seven intersectional feminist principles for equitable and actionable COVID-19 data.” Big data & society 7.2 (2020): 2053951720942544.

Assignment: Pretend you are a journalist. Read this article on data and excess deaths and explore the “Excess Mortality and COVID” dashboard, experimenting with different conditions and locations to get a sense for how it works and what kind of data it reveals. Then, write a 700-word article telling the story of covid from the perspective of a particular condition in a particular place. Be sure at some point in the article to talk, also, about what other kinds of data you would want to collect to tell a more complete the story of excess mortality. Your article must cite at least 4 credible sources to talk about

  1. Narrative framing: How is/was covid discussed in that place at a particular time? (local news, especially as gathered from news archives if considering past waves, will be a good source here) Is there any information about other deaths above average for the same place/time?
  2. Demographic data on that place. You may wish to think about population density, race, age, gender, or political leanings—please be sure to get this from credible news sources or government data.

Optional material:

Watch Hannah Zeavin on “The Distance Cure.”

Videos

There are two types of videos in this module. The first two serve as introductions to the topic. They provide framing for the readings and lay out some of the questions students and instructors may wish to consider as they discuss the material. The second two videos are NEH-funded conversations we held with experts working at the intersection of data and narrative in healthcare. Lisa Sanders discusses her work as a clinician and how she understands the importance of narrative in healthcare. The second video is a public lecture delivered by Kirsten Ostherr on narrative and data during the covid-19 pandemic. The final video is a public lecture delivered by Hannah Zeavin about the history of attempts to automate the therapeutic encounter with particular attention to the language and technology at the heart of those efforts.

Readings

These readings offer various perspectives on the history of thinking about data and narrative and the relationship between the two from the 1980s through the present. They are grouped to highlight the development of particular conversations (Kleinman and Charon on narrative; Bleakley, Ostherr, D’Ignazio and Klein on data and narrative in health and healthcare; Yong and Munson on how these issues play out in specific health contexts).

  • Alan Bleakley, “Data as Stories, Stories as Data” Medical Education 39 (2005): 534-40.
  • Kirsten Ostherr, “Data” in Keywords for Health Humanities (NYU Press, forthcoming Spring 2023)
  • Charon, Rita. “Narrative medicine: a model for empathy, reflection, profession, and trust.” Jama 286, no. 15 (2001): 1897-1902.
  • Catherine D’Ignazio and Lauren F. Klein. “Seven intersectional feminist principles for equitable and actionable COVID-19 data.” Big data & society 7.2 (2020): 2053951720942544.
  • Kleinman, Arthur. The illness narratives: Suffering, healing, and the human condition. Basic books, 2020.
  • Munson, Rebecca. “Their Data, Ourselves: Illness as Information.” Startwords 1 (October 2020) https://startwords.cdh.princeton.edu/issues/1/their-data-ourselves/ 
  • Yong, Ed. “How Did This Many Deaths Become Normal?” The Atlantic. (8 March 2022). https://www.theatlantic.com/health/archive/2022/03/covid-us-death-rate/626972/