Presenting Our Exploratory Research for Navigating the First 24 Hours after Cancer Diagnosis

Week 07 | February 27–March 4, 2024

This week, we were focused on framing and presenting our insights to design and healthcare educators and professionals from the CMU School of Design and UPMC, respectively.

To help us navigate all of the exploratory research and data we gathered, we returned to our original prompt:

Learning you have cancer: What to expect

How might we reimagine the “chemo binder” into a conversational guide that clearly explains the chemotherapy process, aids patients and caregivers in crafting relevant questions for their cancer care team, and empowers them with the knowledge to inquire about diverse resources, research trials, and their specific and evolving needs?

We also revisited where we were in the process, using the Double Diamond method to help us communicate this with our stakeholders.

Our team’s interpretation of the Double Diamond design method.

Divergent Research

The first stage of our exploratory research (the first full diamond) was divergent, meaning that we learned as much as we could about the gynecological oncology landscape. These early stages of design help to inform our intuition and pinpoint small, meaningful changes.

Divergent exploratory research portion of the Double Diamond design method.

We had four main goals during this phase:

• learn from healthcare professionals and educators
• explore the physical spaces of the hospital
• evaluate the chemo binder
• review existing research and design
  (health literacy, social impact, therapeutic narratives, conversational guides, healthcare communications)

“We don’t have a good system to get people what they need, when they need it, and how to get them there.”

Insights | Divergent Research

• Non-print sources were considered more important than print, especially among those with low health literacy
• The binder is given to patients during the chemo education, but that seems late
• The current binder is outdated, underutilized, and not perceived as an object of support
• The cancer journey is nonlinear and nonsingular
• Information in the binder is not specific to gynecological cancers

“When you learn that you have cancer, you need a good resource. What do you give someone and their caregiver that gives them the greatest confidence and hope?”

Convergent Research

The second stage of our exploratory research (the first full diamond) was convergent, meaning that we began to focus our research. This stage let us dive deeper into the problems some may face with the chemo binder.

Convergent exploratory research portion of the Double Diamond design method.

We had three main goals during this phase:

• interview a person who recently experienced cancer treatment
• shadow healthcare professionals to better understand where patients interact with their healthcare teams
• identify important touch points in the system and how they may change over time

Insights | Shadowing

• Casual conversations enhance the environment and care experience
• When recalling information, people tend to use narratives
• Certain topics illicit discomfort and stigma
• Support systems are vital throughout the process
• When making decisions, patients ask about treatment rationale and side effects

“He knows me so well that he was able to frame the story for me in a way that was positive and helpful — and I’ve never forgotten that because how you receive the news shapes everything moving forward.”

Insights | Interviewing

• The way in which you learn you have cancer affects your entire experience moving forward
• The most unexpected aspect of navigating cancer? the time.
• A journal is helpful in putting things down on a page, especially if the information is difficult to offload on a person
• Boundaries are important: both communication and personal and professional commitments
• Would have loved one way of accessing information
• There is a sense of luck and superstition around treatment

“I get a million texts, emails, phone calls… and you’re going to feel stressed about answering them.”

Design Principles

From our exploratory design research, we then formed design principles. We can use these principles as a lens to evaluate how effective our potential designs may be.

1. Make space for multiple voices and perspectives
2. Create modularity that allows patients to alter and shape our design as their needs evolve
3. Engage care givers and existing support systems
4. Communicate to the health illiterate for everyone’s benefit
5. Allow people to self advocate for themselves and ask the questions that they feel are important

“Understanding the time commitment — nobody told me. That was a shock. And it still is.”

Concepts

We have some early ideas in mind for potential designs:

1. A container that holds symbolic figures that spark conversations or hold meaning
2. Physical cards that patients receive upon diagnosis that help prepare them for relevant topics
3. Using therapeutic narratives to help people tell their stories and communicate them to others

The work for this project comes from the Designing for CARE course, designed by Kristin Hughes for the School of Design, Carnegie Mellon University. This course is a collaboration between the School of Design and University of Pittsburgh Medical Center.