Designing the Intersection of Government, Cancer, and the People

In his 2016 State of the Union address, President Barack Obama called on Vice President Joe Biden to lead a new initiative called the Cancer Moonshot. Embracing a human-centered focus, the story of the Cancer Moonshot shows how even the most ambitious projects can proceed in a way that engages stakeholders and users throughout the design process. But I’m getting ahead of myself…

Now, I love a good SOTU speech as much as the next person. But this announcement was personal to me because I’ve bested three different cancers. As someone already working in the administration — first as a Presidential Innovation Fellow, then at 18F — I understood what’s at stake both personally and professionally. And I immediately knew I wanted to be involved.

How do you use technology to help achieve the seemingly impossible — making a decade’s worth of advances in cancer prevention, diagnosis, and treatment, in five years? Here’s the story of what it looks like to design at the intersection of a benevolent bureaucracy, a devastating disease, and the humans in between.

Finding True North

From the beginning, the Vice President was clear: “Every single federal agency with a part to play … will be in the same room together to make sure we’re working from the same playbook.” It really was a team effort, with many moving parts across 20 federal departments, agencies, and White House Offices.

My part on the Cancer Moonshot team was as director of experience design. My main focus was on the cancer clinical trials aspect of the Moonshot, with a single goal: Connecting the Moonshot to the people. While our government’s full of very smart people who have PhDs in kicking cancer’s ass, I wanted to make sure that everyday folks could contribute and have their voice heard, too. You know, the ones who who watched the President’s speech, or those touched by cancer who said, “I want to help!”

After rallying around the mission itself, the UX aspect played out over four acts: ethnographic research, design studios, usability testing, and a digital strategy. (Spoiler alert: we didn’t cure cancer, but we made a lot of progress and there’s a solid 2-year implementation plan. Oh, and because it’s question I get often: Yes, this work is funded and will continue under the new administration.)

Graphic recording from the Cancer Moonshot Summit, held on June 29, 2016. Over 400 cancer researchers, oncologists, nurses, patients, advocates and others attended in Washington, D.C. and 7,000 more came together at more than 300 local summits across all 50 states, Puerto Rico, Guam. (Image: Stephanie Brown)

Conducting ethnographic research

Working with a small team of Presidential Innovation Fellows, we embarked on a month-long, cross-country discovery sprint, to understand the cancer patient journey map, and uncover when a patient may be mostly likely to consider whether a clinical trial was right for them. It took us from Boston to the San Francisco Bay area, and small towns and rural areas in between, including the Navajo Nation two hours west of Albuquerque, NM.

We sat with patients for hours to listen to their stories, understand their frame of mind each step along the way, and learn why they did or didn’t sign up for clinical trials. We talked to nurses and doctors who cared deeply and did everything in their power to bring comfort and a cure to their patients. We met with partners, caregivers, and sidekicks, to discern how cancer impacts their lives, too. And finally we met with cancer advocacy groups and technology companies tackling this issue.

One stop on our tour resonated deeply with me because they fully embraced the “design with, not for” mantra. As the University of New Mexico was designing the UNM Cancer Treatment and Clinical Research Facility, they worked closely with locals so the facility reflected the Native American beliefs. That meant incorporating Earth elements in the architecture, and allowing for loads of sunlight to stream into the building, most notably in the chemotherapy suite. My eyes got misty, and my breath caught in my throat, as we walked into the room, which featured floor to ceiling sliding doors that faced the mountains.

This is real life, heavy stuff, and the emotional labor was high for not only the people we spoke with, but our team on the ground as well. ProTip: when you’re working on projects with a high emotional labor, be sure to give ample time between interviews when possible to allow for mental decompression, and check in with your team frequently to see how they’re doing.

By talking to a wide spectrum of stakeholders, we were able to get a 30,000 foot view of the cancer ecosystem. We learned patients’ challenges and their victories, how they hacked the system to work for them, and their hopes and dreams. We used these qualitative data, the actual voice of the patient, time and again in subsequent discussions whenever the topic of patients or clinical trials came up. We created a journey map and shared it widely with our NCI partners and others working on the Moonshot, so they could see and hear it all, as well.

The Cancer Patient Journey Map, an output of our two month discovery sprint, taped to my door at the White House.

Hosting design studios

One of my favorite UX methods remains, to this day, one of the simplest: bring the outside in. It’s where magic happens: going beyond the usual suspects of stakeholders and subject matter experts, and getting input from people who have little domain knowledge around the problem being tackled.

And one of the easiest ways to bring the outside in is to host a design studio.

We held one in Silicon Valley toward the end of the discovery sprint, and brought a few of our partners from the NCI with us. At this all-day event, we invited nearly 100 mostly non-medical folks in the room: tech folks, designers, engineers, makers, tinkerers, and creatives. We created 5 different prompts for them, centered around “How might we…” statements that focused on the patient experience, including “How might we make it easier for a cancer patient to get treatment?”

Most importantly, we had cancer patients at the event, so as each group went through their divergent and convergent ideation sprints they got real time feedback at their table from someone who would be directly impacted by the product. Through this collaborative process, the attendees and patients came up with the solutions together.

(Side note: my favorite moment came when introducing the NCI folks to the rest of the room. You would’ve thought I’d just said, “And here’s Serena Williams!” with how loudly attendees were hooting and hollering.)

Having the NCI folks with us was clutch, and we all left California inspired. Back in DC, we hunkered down and began using the data and stories from ethnography, along with the ideas from the design studio, as we cranked on our deliverables.

Conducting usability studies

One of the final bits to tackle was the cancer clinical trial search page on the NCI’s website. Working closely with the NCI UX and engineer folks, we talked through pain points in the current state, and asked their hopes and dream for the future state of the page.

Before: the National Cancer Institute’s clinical trials search site, with 12 input fields.

The baseline experience contained 12 fields, asking somewhat-complicated things like trial type, drug, treatment/intervention, and cancer trial ID. We all agreed this could be overwhelming for patients. We also learned that patients may not know the answers to many of the items on the page, or where to find the answers necessarily.

In crafting our research plan, we started off broad, asking how they searched for information about cancer in general, and where they expected to get answers (family, friends, doctor, the internet). We also asked for specific websites they visited. We talked to 6 people across a range of age, gender, location, cancer stage, and cancer type.

A few key insights emerged, namely: none of them searched for the term “cancer” by itself; they all searched for “[my type of] cancer.” They didn’t need to know generalities, they wanted specifics to their case. Another insight: none of them were asked by their healthcare provider whether or not they were interested in a clinical trial. (This was the case for me, as well, with all three of my cancers.)

In one of the biggest surprises, as they scrolled through google search results participants said, when it comes to cancer, they trust .gov sites more than .com sites. One participant said, “Government sites have no reason to give me anything other than facts” about cancer, while .com sites are “probably trying to sell me something.” .Org sites, like the American Cancer Society, came in second most trusted.

As a result of what we heard in usability, coupled with what we learned during ethnographic research, we winnowed down the page from 12 fields to just 3: what type of cancer they had, where they lived, and their age. Questions that are easy, and they know the answer to. Taking a page from the TurboTax playbook (full disclosure: I worked there for 4+ years), we also brought the phone number higher up on the page, and coupled it with the chat feature. Our hypothesis was putting them in the right rail next to the search fields would increase confidence, but not increase calls or chats, via a halo effect. Meaning, they knew the security blanket would be there for them if they really needed it, but they most likely wouldn’t use it.

We also worked closely with the NCI team to put analytics on the page to measure all the things, and our post-launch numbers played out nicely: increase traffic to the trials search results page, double digit increase of visitors more likely to continue from the search results page to a trial description, and basic search satisfaction increased 7 points.

After: the redesigned clinical trials search site, with 3 input fields.

Reflecting on lessons learned

Our team of Presidential Innovation Fellows, the NCI, and White House folks ended up shipping a reimagined cancer clinical trials search page and a revamped clinical trials API. Looking back, a number of valuable lessons emerged, many of which could apply to any large, complex organization:

1. Design with, not for. Find the humans who will carry out the actual work and involve them early on. To be clear: none of this would have been possible without the incredible civil servants at the NCI. We rolled up our sleeves side-by-side with their tech, UX, and communications folks as we worked through the research and deliverables. We spent hours whiteboarding and talking through “How might we…” and “What if?” and “Why?” (Then another “Why?” Then five more.) Our outputs were sharper, and buy-in greater, as a result of this close co-creation process.
2. Bring the outside in. Go beyond the expected, and ask people in completely different industries for their ideas to the problem. We talked to folks in entertainment, animation, financial services, and airlines, to name a few. They cast fresh light on key questions, and pushed our thinking in new ways.
3. Hold on tight to your naivete. It’s the most effective tool in your repertoire. Many times, as UXers, we aren’t the subject matter experts at what we’re working on. Use that to your advantage. Get folks to explain why something doesn’t work, or what could be better.
4. Humanize the effort. Mail pours into the White House every day, and staffers would send President Obama 10 of those letters every night. Inspired by this, I asked that team to pull cancer-related letters, and every Monday morning I’d send one to the Moonshot team. Instead of relying on personas, a tool which can be good or bad but at the end of the day aren’t real people, introducing actual humans on the regular grounded us.

At the end of the day, the Vice President liked to say what people with cancer really wanted was time — another couple weeks or months to see a baby born, or to walk their daughter down the aisle. That’s why I raised my hand to be in the thick of it: to use tech and UX to help people have those moments.