Designing for women in the current gaslighting healthcare system
The overused phrase “hysterical women” is almost in fashion these days. Various technological advancements in healthcare have masked the current situation of women’s symptoms regularly being misdiagnosed. Historically “hysteria” was a catchall diagnosis for women's health issues. The problem of misdiagnosing women has reemerged in varied forms—the over-prescription of pills like Valium, delayed diagnosis and treatment, and recurring cases of gaslighting, where women are told that their reality is inaccurate—all seem like great ways to protect the patriarchal system. Through her thesis titled Hysterical Women, Rhea Bhandari aims to elevate the healthcare experience of women by designing more efficient and empathetic diagnostic and treatment strategies. Her thesis relies on insights provided by stakeholders, including female patients, healthcare providers, medical students, and therapists.
In her research, Rhea uncovered four major needs: First, patients need adequate tools to describe their symptoms to their practitioners. Second, healthcare providers need to differentiate physical and psychological pain at an early stage of the diagnosis process. Third, medical practitioners need training that is comprehensive and includes empathy training. Fourth, patients need empathetic acknowledgment of their symptoms by their healthcare providers; this acknowledgement has been shown to help patients heal.
A patient can be prescribed a range of treatments (pills, ointments, therapy, etc.) based entirely on how she describes her pain. Rhea interviewed a patient who had been misdiagnosed for over 2 years. This patient said she needed a barometer to measure her pain because many doctors and family members did not believe she was sick, due to the lack of any physical signs.
In most situations, a patient only meets with their doctor 3–4 times; this makes it hard for the doctor to assess the patient's pain level in accordance with the patient’s pain threshold. The existing pain scale isn’t coupled with any tool for reference that analyzes what pain level 7 means for an individual. So Rhea wanted to design a product to help patients better communicate their pain experience.
WOMEN IN PAIN
A Co-creation Workshop
Rhea organized private workshops where women who experience physical and/or emotional pain created their own pain scale to describe their symptoms. In this workshop, women expressed their symptoms through words, two-dimensional scribbles, and physical embodiment of their pain. The most effective method of communicating pain was for women to first draw their physical pain and then narrate their story.
Rhea claims that “it's all about effective storytelling—for patients as protagonists—to share their stories with doctors and their friends and family to help them understand their pain.” This became the starting point for her exploration of alternate methods for recoding and depicting pain.
Next, Rhea organized a social game called Clinic Charades, which aims to counteract the gender bias in the healthcare industry by equipping people with a different set of tools to describe their symptoms. Rather than using conventional language, participants translate their symptoms into visual expressions of pain.
The game focused on discussing invisible symptoms—symptoms that are hard to measure or describe. This was a two-part event. First, participants played a two-player game of Clinic Charades, where one person is assigned a symptom and draws it on a window display, and the second player, on the other side of the window display, guesses it. Next, after players got comfortable drawing and guessing symptoms, they were asked to draw their own invisible symptoms.
Rhea mentioned how eager the participants were for a tool like this to help express their pain; participants talked about the urgency to create something much more accessible for people.
A self-expression app for an efficient diagnosis
One reason that doctors dismiss women’s symptoms is that patients often don’t have the tools to describe their symptoms. In her book, Every Patient Tells a Story, author and physician Lisa Sanders reports that time constraints on doctor’s appointments mean that the average patient gets interrupted 11 seconds into their history-taking procedure if they are unable to describe their symptoms quickly enough (Sanders 2010). Rhea clarifies that this isn’t because doctors are arrogant or don’t value the patient's history; rather, it is because of lack of time.
Paint is an app that allows patients to document and describe their symptoms using more than just words. With the app, patients can illustrate their pain in real time by scribbling on or marking relevant areas on a diagram of a human body. This app allows patients to specify the duration and intensity of their symptoms and express how they feel in that particular moment through text, voice, emojis, and images.
An aggregation of these entries helps patients create their own “PainScape,” which shows where their pain is manifesting. The app provides a summary of the patient’s predominant and minute pain areas—making it easier for doctors to understand the patient’s experience. The PainScape not only helps the patient effectively communicate their pain to others, but it also helps the patient understand their own pain.
THE RANI PINK CHAIR
As Rhea talked about her year-long journey into women’s experiences in the healthcare system, she pushed back on creating designs only for the hospital or the home. Women spend a lot of time at work, and pain, especially the ubiquitous pain of menstruation, is not necessarily recognized or catered to there. So she created the Rani Pink Chair, a heated lounge chair specifically for the office that includes foldable arms that wrap around and “hug” the sitter. The chair puts the spotlight on period pain in the workplace. It provides both the necessary warmth for the woman’s body and a way for co-workers to acknowledge the women’s pain.
A transdisciplinary care platform
With increased time spent using technology, doctors spend less time diagnosing an illness. There are clear indicators that show that spending more face-to-face time with patients increases the probability of accurately assessing their type of pain, that is, differentiating between physical and psychological pain.
In addition, while the pain may have a single origin (physical or psychological), it may cross over to the other kind of pain if not addressed promptly. Consequently, if the problem is diagnosed early, the chances of misdiagnosis are reduced and more appropriate treatments follow. With pain diagnoses, unfortunately, there is an added layer of gender bias, where women’s pain is stereotyped to be psychological rather than “real.”
Desolve is an app for specialist doctors to conference call with psychologists, therapists, and counselors when first diagnosing a patient. Desolve is meant to be used for first-time patients during an initial consultation. If the doctor thinks that there could be psychological causes of the pain, the doctor can request a psychologist to participate virtually in the patient’s first meeting. This way, the patient’s physical pain and psychological pain are treated simultaneously. Rhea explained that this complies with the legal policy of treating physical pain first.
A study conducted in 23 countries concluded that two-thirds of patients around the world feel disrespected by their physicians. Bhandari emphasizes the need to bring empathy back to the doctor’s office.
She developed CareAssistant, a plugin to the existing Electronic Medical Record (EMR). The plugin uses artificial intelligence to track the data entered by the doctor into the patient notes. CareAssistant works like a pop-up chatbot and provides doctors with statistics about similar, past symptoms that the patient experienced. It also sends recommendations on empathetic language to be used based on the symptoms.
Empathetic language suggestions are unique to CareAssistant. While doctors try to focus on their patients and not on the EMR, logistically this is difficult to do. This plugin gives language suggestions in real time so that the doctor can voice their empathy and show their willingness to help. Additionally, because CareAssistant is part of the EMR, doctors can quickly adapt to using it.
SUBJECT MATTER EXPERT INTERVIEWS
Designers and Policymakers working in the field of healthcare
A FEMALE PATIENTS' CARE JOURNEY AT THE HOSPITAL