Imagine this: You just went through the emotional and physical hell of breast cancer treatment for months – maybe even longer. You suffered through chemo and lost your hair, changed your schedule and diet, did research, struggled to cope with your emotions and other people’s too, and possibly went into debt.
Like the three million women who survived breast cancer before you, you’re all too familiar with difficult health care choices. In the face of a high risk of recurrence, over the next five years you’re willing to go through a lot to make sure that if the cancer returns, you detect it early. Recently, more women and doctors are adding MRIs to the usual mammography as part of post-treatment monitoring, but should you? Extra tests can be inconvenient, expensive, and create anguish when false detections take time and work to resolve. You may even end up treating something that never would have caused a problem for you. You’re emotionally and physically exhausted and there’s little information available to help you make this decision.
This is the challenge Group Health Research Institute (GHRI) set out to address with their SIMBA study (Surveillance Imaging Modalities for Breast Cancer Assessment). Conducted between 2013 and 2016, the study goals were to conduct the largest-ever analysis of the effectiveness of mammography and breast MRI, then use the data to empower patients to select the right imaging solution. They gathered perspectives of patients and doctors, then began the analysis with 36,000 breast cancer exams. Early in 2016 they approached Artefact to design a decision aid that could help breast cancer patients understand and discuss their monitoring options.
“Human-centered design turned the insights from our research into a tool that can help breast cancer patients feel confident and comfortable with their decisions in time of high anxiety. SIMBA is a great example of what patient research and human-centered design can do together.”
“This information has prompted me to talk to my oncologist about my breast density and if that would indicate an MRI might be warranted.”
Patients told us that personalization made the decision aid more valuable and interesting than any other resource. The personal report is tailored to each user’s unique medical history, and powered by GHRI’s data analysis. Each woman receives her own numerical, text, and pictograph descriptions of how often cancer will be correctly and incorrectly detected or missed with each type of imaging. The report highlights factors that are personally important, as well as the option she currently favors.
As a woman goes through the decision aid, she is prompted with questions to capture her values. Prompts ask for her current stance, then the factors she finds most important (e.g., avoiding false detections, health risks of the procedure, cost, duration). We designed these prompts to encourage reflection on each topic and capture data that can be included in the personal report in order to guide discussions with family members and doctors.
We know that small design decisions – like the order in which information is presented or the type of visualization used – have the potential to unintentionally bias women toward one option over another. To reduce bias in our design, we consulted behavioral economics, cognitive psychology and human-computer interaction literature on factors known to influence decision-making and risk perception.
Communicating complex medical information to a wide audience can be especially challenging. Working with a plain language expert from GHRI, we carefully reviewed language we used to ensure that women would be able to easily understand the information regardless of their level of education or English proficiency. To improve readability, we organized the information by topic using a “card metaphor” and used large headers to help orient the patient in the tool.