I love big ambiguous problems and I equally love frameworks to help me make sense of them. My training as a designer and my lived experience with my tumor Ursula have got me even more comfortable with being dropped in the ocean and having to navigate back to shore.
This year I started applying work methods to my health, using design thinking with a team focused on outcomes for me, the patient. Loosely following what designers call “the double diamond”, we’re working through four phases to get clarity on both the problem and possible solutions.
Introducing the Double Diamond
The double diamond is a rough approximation of the ideal design process, a series of divergent and convergent thinking steps to develop a product or service. It takes you from an initial prompt, discovering more about the issue through user research, synthesizing the research into a few findings, diverging again while considering prototypes / solutions, and then to your final concept in delivery.
Step 1: Discover
For Ursula, we are in the discovery phase of my journey. We identified a problem (my tumor, duh) and put together a research plan to learn more. In this phase, we’ve been doing research of both the qualitative and quantitative variety, to understand what is driving Ursula’s growth.
The qualitative research happens mostly in doctor’s offices and 1:1 with other patients. In practice it is me and my team asking a lot of questions and recording notes in our shared Notion workspace. For example, a few weeks ago, with the help of friends in Israel (thanks Caroline and Yair!), we were able to get the Israeli doctor who invented chemoembolization for Desmoid Tumors on the phone to answer all of my questions and concerns about the procedure.
The quantitative side is much more complex and involves cutting edge research with labs around the country. Research to the People organized a data planning meeting with 7 experts to help brainstorm scientific questions about my case and prioritize which data to collect.
After this process, I will likely be the most studied Desmoid patient in the world.
Step 2: Define
Once we collect all of the data and scientific questions, we move into synthesis. In design, this usually means A LOT of post-its. For this project, it will likely result in complex file types filled with raw data.
This fall, with open source data on a server, we will be forming teams with bioinformaticians, researchers, and doctors to look for trends, abnormalities, anything that could point to what is causing the growth. Understanding Ursula’s “needs,” “motivations,” and “behaviors”—she will be the ultimate user research subject.
Step 3: Develop
Next up, we go wide and start looking for solutions. We’ll explore many ideas and possible resolutions for long-term Ursula suppression. The medical team will be conducting a “lit review,” looking through relevant literature to explore clinical options. It could result in new medical therapies or existing treatments we have yet to consider. Ideally whatever suggestions we pursue are backed by research for my tumor, which would be the first time in 10 years there is actionable research on my case.
Step 4: Deliver
In this phase, we start pursuing new treatment options and see if they work! Hopefully finding product-market fit 😜 and rapid anti-growth.
Designing my way to freedom
Upon reflection, the juxtaposition of diving in for ambiguity at work and succumbing to numbness for ambiguity with health is baffling. It’s not about being out of my element or being overwhelmed by technical jargon. I have, after all, been working in crypto for the past 3 years...Yet this is a pattern I’ve observed with friends as well. Our health system is designed for us to grab a seat on the rollercoaster and tuck in 🎢. But when we don’t like the ride or the situation is complex, applying design thinking by moving through definition, discovery, development, and delivery could be a fresh way to approach an old problem.
Now, when I talk about my health with friends, instead of empathetic and weighted eyes, they ask me about my “health startup” with a hint of optimism. Potential success or failure aside, this approach is way more fun.
Put on your curiosity hat, recruit a team of experts, and see what’s possible. Maybe complex medical issues don’t have to be so complex after all.
Thanks Jeanette Mellinger, as always, for the edits.