PWR 194BR: Patient-Centered Stories, Research, and Advocacy

A goal of healthcare is to be “patient centered.” Healthcare workers are told to cultivate their empathy, “bedside manner,” and cultural competence in order to communicate effectively and better treat their patients. But what does this mean in practice? And how can this goal be achieved when many people face obstacles to accessing healthcare at all? To approach these questions, we will listen to and center patients’ experiences – via their contributions to art, advocacy, and research.

It is especially important to center patients’ stories because they have not always been listened to – from patients who literally go unheard because they do not speak English, to Black patients who are more likely to have their pain go unbelieved and untreated, to women whose symptoms are more likely to be ascribed to “hysteria” (historically) or to “anxiety” (today). These questions are also fraught as healthcare in the US is expensive and often inaccessible. Many types of healthcare have become increasingly politicized – including access to reproductive healthcare and gender-affirming care. And, as advances in medical technology begin to blur into science fiction with breakthroughs in mRNA vaccines and gene-editing, it is all the more important for the average person to understand and be involved in the future of medicine to guard against misinformation and conspiracy theories.

From the foundation of our shared texts, conversations with guest speakers, and analysis of cultural objects – including documentaries, podcasts, art, and dance – students will design a final project of their choosing. These projects could take the form of art, research, and/or advocacy, in a genre or mode of your choice. For example, an interest in understanding how data visualizations can convey the lived experience of an illness could take a variety of forms, from a research-based essay to a series of visualizations (with accompanying text intended for different media and/or social media outlets). An interest in the needs and desires of a particular patient demographic could lead to developing materials to share with healthcare workers, or to crafting a personal essay or other creative piece.

Main Assignments

Four short response/engagement pieces across the quarter, inspired by a particular day’s text/object(s)

(~800 words or ~2 min. video or ~2-3 images with reflection): You’ll sign up in class for the days/objects you wish to cover, and you’ll have a menu of possible genres/modes to work in – spanning our categories of art, advocacy, and research. For example, when we listen to accounts from the HIV/AIDS activism of ACT UP, you might choose to write a short analysis of the strategies used to raise awareness, or you might choose to apply some of these strategies by designing art/slogans to inspire action around a health crisis today. When we read theories about the difficulty of communicating pain/illness, you might choose to write a short creative or expressive piece that confronts those difficulties in practice. The goal of these shorter pieces is to more deeply engage with some of the course content of your choice, while also laying a foundation for possible final projects.

Project Proposal

 (~600 words with accompanying bibliography, including both sources you’re referencing or incorporating into your piece as well as sources that are serving as models of the genre/mode you plan to engage with): This short proposal will outline your plans for a final project, taking up whatever path (art, advocacy, research) you wish to engage in and whichever genre/mode you find most appropriate to your goals. You are also welcome to propose an expansion of one of your short response/engagement pieces.

Final Project

(~2000 words or ~7 min. video or ~6 images/data visualizations or equivalent with a reflection on your process): Your final project will be an opportunity to produce a longer-form and polished piece of work that you might include in a portfolio of your work.