Even after a woman survives breast cancer—the stressful diagnosis, the painful treatment, and the slow recovery—it still isn’t over. Routine monitoring, by mammography and MRI, needs to take place for years after treatment is finished.
As a survivor, "You’re kind of back to your normal life, but every time you go back to testing, it all comes back," says Dave McColgin, Insights and Strategy Director at Artefact. "Every time they get into the car to go for their visit, they remember everything."
This is the oft-overlooked part of someone’s breast cancer treatment: Surveillance. Breast cancer survivors in the surveillance phase need to make one big choice: whether they’ll be getting mammograms, or whether they'll opt for some combination of mammography and MRI. That choice is often unclear and can lead to a lot of anxiety, because an MRI may be more sensitive, but it can also generate false positives, and suck someone into feeling like they have cancer all over again.
That's why the Seattle-based Group Health Research Institute, or GHRI, commissioned the design team at Artefact to create a "decision aid" for patients in this phase of their treatment. It's called SIMBA, and it's a tool designed to help America's 3 million breast cancer survivors decide their course of future treatment with as little stress as possible.
Today, such decision aids are usually just paper printouts that a nurse or doctor can hand a patient. That's quite useful for flexible hospital contexts—you can just hand someone a piece of paper and be done!—but Artefact imagined how a decision aid could be improved if it lived on a tablet.
The tablet was the perfect platform for many reasons—it’s easily shared with someone in the same space, like a doctor, and older women as a demographic have a strong affinity for tablets already. But the biggest update was the possibility of customization. While most decision aids are static documents, Artefact wanted to hone information as closely as possible to someone’s exact circumstance, from their physiology to their previous treatment.
"The first thing we ask you to do is enter information on your last cancer. It was later in the tool, but we found people valued the tool differently when they learned that the results would be specific to them," says McColgin. "And we phrased these questions in a way that we thought women can actually have an answer to them."
An example of asking a question the right way? "Do you have dense breasts" versus "Have you ever been told by a health care provider, you have dense breasts?" It’s a subtle shift, but just the sort of diction that can elicit a vastly different answer from a patient. The former invites speculation and personal anecdote. The latter is a plainspoken means to probe for an exact medical diagnosis.
Looking over the aid, it’s remarkable to consider everything it’s lacking—namely, stock photos and graphics. Despite the fact that it lives on a screen that’s capable of any form of multimedia, Artefact paired visuals back to a spartan presentation that’s primarily text.
"The women we talked to ... indicated many women are turned off by overuse of pink, ribbons, and stock women smiling. Especially when doing research and trying to make an informed decision, they’re interested in authoritative facts and cues for trust," says McColgin. "A few women even reported looking for sources and dates of information, and even reading journal articles."
Indeed, the final product more closely resembles a journal article than your average hospital brochure. But Artefact did use graphics where they counted most—for real illustration. This included a video of what it’s like to get an MRI, as well as statistics drawn out as data visualization.
While including real data was important, statistics were never presented in "statistics-talk." That means "point one percent" became "one out of a thousand," because testers understood real numbers better.
That same philosophy spilled over to the graphics. Artefact always listed stats with a real headcount in a horizontal pictogram. "Even when we have small numbers, this grid is 1,000 right rectangles on the left, and 1,000 on the right," says McColgin. "We repeat them every time we show a stat. We found it was actually important that we showed all 1,000 each time. When we just showed [bar graphs], women lacked an understanding it was part of the same whole."
While presenting statistics in this graphic way enhances SIMBA's informational clarity, it also helps eliminate narrative bias. Studies have found that pictograms in particular can help eliminate the tendency to lean one way or the other to a point of view.
Likewise, the tool is split into two columns regarding the core decision at play for cancer survivors: mammogram (on the left) versus breast MRI (on the right). The design gives equal real estate to either decision a patient might make, complete with block quotes from patients and doctors who lean one way or the other.
In a way, the tool begins to look like a Republican vs Democrats partisan debate, or the way the media has long covered global warming—giving equal time to scientists and idiots. I couldn’t help but question the validity of the tool to help someone make the best decision. Wouldn’t it be better to offer a patient an answer rather than a choice? To simply list the best, most scientifically sound option for their particular circumstance?
"Right" answers are always tricky in the medical profession. The GHRI is currently studying of which course of treatment is best for a variety of different patient circumstances (Artefact filled SIMBA with existing data that will be updated when the study is published). But Karen Wernli, Assistant Investigator at GHRI, expressed to me that from what she's seen of her study's preliminary results, mammography might always be the better option for a cancer survivor, given the negative impacts to false positives found by MRI. At the very least, mammography might be the best monitoring solution for most survivors most of the time.
So, if one option is most probably better, and SIMBA can recognize this from the very first questions of the quiz, why walk through this giant pros and cons list?
"We may give equal real estate but we are not trying to make the options look equally valid," McColgin counters. "Our goal is to be accurate and complete in explaining the effectiveness and experience of each, and I think that’s part of why women felt confident in their preference after using SIMBA."
Indeed, from Artefact's own test of 33 patients using SIMBA versus an industry standard aid, women reported both a higher confidence in their ability to make a decision, and a better understanding of the core material with SIMBA. And maybe that’s what the ideal health education tool needs to offer someone—at least someone who has the facility to dig through a few pages of text and graphs. Not an outright one-line answer that has no context, but just enough information to guide the most scientifically valid choice that someone can make on their own accord.
SIMBA may or may not be publicly available after the study ends later this year.