What My Cancer Treatment Taught Me About Healthcare Design

Three years ago, I was diagnosed with an aggressive bladder cancer. This type of cancer is very unusual in otherwise healthy 42-year old people, but I caught it early enough that I was able to complete a full course of treatment, and my doctor has put me in the class of patients with the highest likelihood of long-term success.

For my type of cancer, treatment has meant 2 surgeries to remove the cancer and then 17 rounds of immunotherapy over the last three years. I think this immunotherapy is “better” than chemotherapy in terms of side effects, but it is still pretty unpleasant – it involved instilling live botulism bacteria into my bladder to stimulate a local immune response. No fun. I’ve also had an enormous number of tests – CT scans, scopes, a surprise biopsy (cancer-free, thankfully), fluid analysis, etc.

When I’m not dealing with cancer, I run a design studio that does significant work in the healthcare space. When I had my first surgeries, we were literally working on a product that helps improve scheduling of elective surgeries for a major healthcare provider. Last year, we helped another large provider redesign the service experience for patients undergoing cancer care at one of its facilities. It’s been an interesting exercise, and occasionally a useful distraction, to observe my care journey from the perspective of someone who has been responsible for designing care journeys for others. Kind of the ultimate empathy-building exercise (though I don’t recommend it).

A few things I’ve noticed along the way:

Existing online resources for people with cancer were really bad (for me).

When I first got diagnosed, I went to authoritative sites like the Mayo Clinic to learn about my type of cancer. This was a mistake. The best of these sites take the highly appropriate and responsible approach of writing about the disease with a near-clinical tone. They know that people are coming to their material to answer the big question: “Will I die from this disease?” The correct answer from a scientific perspective is to talk about morbidity over timelines across a broad population. This was actively harmful to me – it wasn’t helpful for me to see that an average person with my type of cancer has a significant chance of dying within 5 years. Intellectually, I knew that those populations included people with many comorbidities I do not have, and I knew that I was a couple decades younger than the average patient, but it still was data without comfort.

Balancing medication side effects is hard.

I came into this knowing this to be true – we literally had designed a cancer care app several years back that included medication tracking. Turns out living it gave me a much more nuanced perspective. Over the course of the last three years, I’ve very actively tried medications, observed their side effects, talked to my doctor, and rebalanced. I have the privilege of being a wealthy, educated, cis, white man, and communicating with my doctor was pretty easy for me. However, 80% of patients don’t complete the treatment I received, so I imagine that the same can’t be said for everyone. Without the tools, support or access needed to understand the side effects any one medicine has and to make changes, this process must be incredibly intimidating and discouraging for most people. It was really hard for me, and I was a best-case scenario.

I’ve never felt more like an object than when I was on a hospital bed.

When my car has an issue, I drive over to my mechanic, pull into the garage, and a couple of people descend on the car to poke at it. When I had my surgeries, I was the car. Someone literally wheeled me into an OR where there was a team of people quietly prepping surgical instruments that were about to be put into my body. I didn’t know these people, and these people only knew me as a diagnosis to resolve. It was a miraculous process – I was awake, then I fell asleep, and I woke up without cancer. It was also incredibly alienating. Because of my past work, I’m very aware that the hospital is going to want to do 5 – 7 cases in that OR on the day I had my surgery, and I sure did feel like a broken machine going in for service in a facility run as efficiently as possible.

I come away from this experience with a clearer sense of the design opportunity across this system: healthcare is dispassionate by design, and yet we humans get caught up in it and have human reactions like pain, confusion and fear. Despite my very positive experience with my providers, I didn’t get any support at all for those human reactions. And I’m just one person out of the ~2,000,000 that will have a cancer diagnosis in the US this year, which is a small fraction of the population that will interact with the entire healthcare system. That’s a whole universe of human need. I think it would take a lot of hubris to say that design has a significant role to play in mitigating all of that need, but there are certainly meaningful interventions that digital products and services could make.

Coincidentally, Insider just published this article on a JAMA paper comparing AI-driven responses to questions on Reddit to responses from doctors. It’s worth looking at – responses from the AI were rated by medical professionals as having higher quality and being more empathetic. The empathy piece is particularly relevant to me. I sought that out several times in the course of my treatment, and found it to be in really short supply.

I think what’s also clearer to me is that the scale of our healthcare situation, and its associated service problems, is so large that it’s impossible to imagine we will have enough humans to truly care for all the patients. There’s an enormous gap waiting to be filled by innovative products and design in allowing patients to better serve themselves. That Insider article above discusses the value of self-service in terms of diagnosis and triage. There’s also a huge need in supporting people with chronic conditions who may only see their doctor four times per year, but are dealing with their disease conditions every day.

I, for one, am looking forward to getting started working on these tools that will provide meaningful support between the doctor visits. Especially now that I’m done with my fucking cancer treatments.