Supporting Women and Physicians in the Journey with Endometriosis
A design management approach to helping women in pain and their health care providers navigate improved health journeys with endometriosis
Sensing the System
It’s early in the morning and Lisa is exhausted. This was the fifth night in a row she’s only gotten a few hours of sleep because of her pain. She’s not sure what is causing the pain. She’s had these episodes a few times now, and doctors have not been able to tell her what’s going on, as blood tests and examinations do not seem to show anything unusual. Today, even painkillers aren’t helping. She does not think she can make it to work. Frustrated and helpless, she decides she needs to see the physician again. She hopes that this time she’ll get answers and the doctor will be able to help her cope with the situation.
This is what a typical day might look like for a woman suffering from endometriosis. Endometriosis is a chronic condition that affects around one in ten women. Despite this, the disease lacks awareness and there is still a diagnostic delay of 6-10 years. Although many reasons are known for this, it is still an ongoing issue. Women feel that one of the leading causes for this is the normalisation of their pain and not being taken seriously by physicians. However, while there’s undoubtedly a lack of knowledge, there are difficulties faced by both physicians and women which affect the problem space. These barriers stand between women and physicians and negatively affect the journey from pre- to post-diagnosis. Consequently, factors such as patient satisfaction and the quality of care and treatment provided suffer from this. A woman like Lisa may then go through countless doctor visits over the years, enduring excruciating pain, feeling helpless, and not knowing what’s causing her suffering.
Through co-creation with affected women and endometriosis specialists, a collaborative health app and service called Aurora was developed. Aurora aims to support both physicians and women living with endometriosis by helping diagnose, treat, and manage the condition. It provides a platform for women to track their symptoms and gain a better understanding of their bodies and pain. It can help objectify the pain they experience and better demonstrate and explain it to their physician. For the physician, it provides an overview of the woman’s symptoms which can help identify and treat endometriosis.
Aurora can facilitate communication, understanding, and delivery of care between physicians and women. This tool aims to empower women to take charge of their health and help both physicians and women learn more about endometriosis and co-create improved health journeys. In Lisa’s case, her doctor may recommend tracking her symptoms on Aurora so they can work together to figure out what is causing her pain. Instead of sending her home, waiting, and hoping her symptoms improve without offering her anything she can do, Aurora can foster a sense of empowerment and make her feel like she and her pain are being taken seriously and that she is being supported.
Awarded the prize of the zeugindesign foundation
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