Hacking Healthcare

Designing Human-Centered Technology for a Healthier Future

Shobha Dasari

• Publisher: New Degree Press
• Year: 2021
• eBook ISBN: 9781636762449
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Before getting an MRI, almost eighty percent ofchildren need to be sedated to stay still enough for a good image. But in the year after the Children's Hospital of Pittsburgh installed Doug Dietz's new machines, they only needed to sedate two children. What did Dietz do differently?

Hacking Healthcare: Designing Human-Centered Technology for a Healthier Future shows that human-centered design of technology can improve healthcare as we know it. Diving into stories from Stanford's Byers Center for Biodesign, StartUp Health portfolio company AdhereTech, and more, you will learn how unfriendly design in healthcare affects patients and doctors alike - and how innovators are changing that. From a pill bottle that reminds patients to take their medications, to incorporating Google Glass to help doctors with patient visit documentation, effective technology design is changing healthcare for the better.

Wondering what the future role of technology in healthcare will be? Curious to understand why current technologies are so inefficient and how they can be improved? Hacking Healthcare shines light on how human-centered design can shape the future of technology in healthcare. This book will be especially interesting to those who are excited about healthcare innovation and developing technologies for real-world impact.

Chapter 7

Patient as Innovator

---

During her talk at the 2017 Stanford Medicine X conference, Dr. Joyce Lee posed a question: “Who’s the real expert in this picture?”

“Is it the guy on the left with a white coat in a laboratory?” Dr. Lee asked. “Or is it this little girl who’s had type 1 diabetes since she was two years old and knows the ins and out of living with this disease twenty-four seven?”141

Dr. Lee, a pediatric endocrinologist at the University of Michigan, believes the latter is the true expert. She is a proponent of the patient-centered participatory design movement in healthcare, which seeks to include patients—who she views as experts in living with a health condition—in conversations about what medical problems truly need to be solved.142 “It’s a point of view that doesn’t exist in healthcare as we know it today,” Dr. Lee added in her Stanford Medicine X talk.

Known as “Doctor as Designer” on Twitter and Medium, Dr. Lee frequently writes about the importance of good design in healthcare and the role that patient-experts play in designing good products. But Dr. Lee has no formal training in design. In fact, she only discovered the power of participatory design in healthcare because of her son, B (nickname preferred by Dr. Lee), who has life-threatening food allergies.

Because of B’s severe reactions to certain ingredients, his caregivers at school need to learn how and when to give him an EpiPen. However, the instructions included with an EpiPen, to Dr. Lee, are a “design fail.” They are two sheets of paper packed with tiny black text. In an emergency situation, a caregiver would not have enough time to read and understand all of these instructions. This could have dangerous consequences, such as the caregiver accidentally sticking themselves with the EpiPen or, worse, the caregiver not knowing when or how to use the EpiPen on B.

Dr. Lee, a self-described “lazy tiger mother,” decided to redesign this instruction manual and roped in B, who was six years old at the time, to help her. Together, they created a short YouTube video for B’s teacher to simply explain the proper usage of an EpiPen. The video features B’s voice and hand-drawn illustrations, while Dr. Lee created the script and included the important medical information.

The video is both informative and humorously adorable. B begins the video by confidently saying, “I am allergic to dairy and nuts.”

Faintly, Dr. Lee corrects him in the background: “And eggs.”

“And eggs,” B adds.

The other slides in the video include information on when it is appropriate to give B antihistamine to combat his allergies versus when to use an EpiPen Jr. and how to use the EpiPen itself. These slides feature B’s drawings of his symptoms, including hives, swollen lips, and even vomiting. On another frame, B warns, “Do not touch the orange tip, you will poke yourself instead of me,” with a big “No!” drawn in red marker. The video ends with an illustrated smiley face along with B saying, “Thanks for taking good care of me!”143

Dr. Lee shared the video on her blog and sent it to B’s teacher, who shared the video with the entire school. The video was also featured on well-known pediatrics and health technology blogs as an effective health communication strategy.

“I would call this prototype a design success,” Dr. Lee said in her TED talk. B and Dr. Lee went on to create two more videos—one was about ingredients and food handling, and the other pertained to B’s asthma.

From this experience, Dr. Lee gained three main design insights about herself and B:

1.They were experts. “As patient and caregiver, we knew exactly what problem needed to be solved.”

2.They were makers. “We had access to very simple tools like an iPhone and screen-casting software, and we could upload to social media like YouTube and blogs in order to distribute our prototype.”

3.They were collaborators. “[B] had the skills and artistic talent; I added a little medical information and pulled together the primitive prototype.”

This project shaped Dr. Lee’s vision for the future of healthcare, which she summarizes as, “Patient as Expert, Patient as Maker, and Patient as Collaborator.” Dr. Lee envisions a future where patients are “co-designers” of health and drive conversations about what problems they actually need solved. She believes that design needs to be treated as part of the culture in healthcare, rather than as a distraction or additional bonus to traditional medical care.144

This is in direct contrast to the current culture of health, where doctors are considered the experts and patients are more passive in their healthcare journeys. In Dr. Lee’s view of the future, the patient-physician dynamic is different. Rather than having a paternalistic relationship where doctors tell patients what they should do, Dr. Lee believes that patients and physicians should be collaborators, both actively working together toward the same goal of better health. And in some cases, patients may even create solutions for their problems themselves, as Dr. Lee and B did.

Inspired by her own experiences with participatory design and making, Dr. Lee created a collaborative network of patients, caregivers, physicians, makers, designers, and researchers called HealthDesignByUs. The goal of this organization is to foster patient-centered design in healthcare through workshops and events like the We Make Health Fest, which brought together people with ideas about how to improve healthcare (mostly patients, caregivers, and researchers) and people who have technical or design skills who can help bring these ideas to life.

Through these events Dr. Lee seeks to motivate patients, especially those with chronic diseases such as diabetes, to view themselves as experts on their own lived experience with their health condition. A participant at one of HealthDesignByUs’s events, who is a type 1 diabetes patient, recalled, “We got badges that said ‘expert’ underneath our names. It’s really empowering because I don’t really think I understood that I have a voice too. I am an expert. I know exactly what I’m going through, and I don’t think I ever really realized that until it was on a badge.”145

Dr. Lee believes that this empowerment of patients will result in the design of better tools and technologies that will revolutionize the health care system and the culture of healthcare. “Patients and caregivers have incredible knowledge and insight about the problems in health care,” she summarized in an interview. “We’re setting the stage to say to them, ‘You are the experts, please help us co-design health care solutions that will make a meaningful impact.’”146

* * *

Most patients haven’t gone to medical school. They don’t know how to interpret a radiology scan or how to perform a surgery. But that doesn’t mean their experiences and expertise are any less valuable for healthcare and medical innovation.

Patients are deeply knowledgeable about the lived experience of having a health condition, which can only come from the day-to-day struggle to survive and thrive despite their body’s limitations. They know what actually matters to them a...

Table of contents

• Contents
• Introduction
• Designed for Sickness
• Human-Centered Health Technologies
• HealthCARE
• The Clinician’s Role
• Work with Workflows
• Healthcare, the Eight-Headed Monster
• Patient as Innovator
• Designing for Health
• Acknowledgments
• Appendix