Can you make a difference? Can you move the needle just a hair? Something so simple may not always seem burdensome. But, it opens a world of possibilities. It opens the doors to new ideas. A team from the Sullivan Breast Center, led by Caroline Shafa, Sibley's Vice President of Operations, embraced this challenge and came to the Sibley Innovation Hub with this goal. As she reflected at the very start “cancer is so incredibly difficult, and I’m sure we all know someone who’s been affected by it,” but the team took it in stride—determined to move the needle of breast cancer care. The hardest part—designing with the end user in mind without any idea of what the final product might look like. This is a story about a team determined to support, to be there, and to give back a sense of control.
As always in design projects, the journey began with listening. In the very first meeting, the team invited a survivor to speak about her experience—where she felt isolated and supported, afraid and surprised, alien and human. Although it was a short interview, it brought a lot of weight, and it helped the team realize that this glimpse of the tip of the iceberg was the beginning of something much larger than could have been imagined.
Following the Hub’s Design Race format, the team went straight from this initial inspiration to dive deeply into the experiences of those going through the process or those who had been there before. The interviews were hard. Each story depicted the various ways in which people had engaged in this process differently, and it was evident that each person had been struck by different moments throughout the process. There were moments that could be planned for and ones that were unexpected, but a common theme emerged around rediscovering a sense of “normal” as well as grappling with a continual loss of control. Here are just some of the things the team heard:
- someone saying “you are so young to me”-patient,
- “if this was your mother, would you have her do it?”-advocate
- “having a photoshoot (with friends) made me feel normal, like a woman again”-patient
- “I have gone through this before, I brace myself every year”-patient speaking about annual screenings
- “I’m in good hands. My doctor says we got this”-patient
- “I just wanted to feel normal again”-patient
- “I refuse to tell anyone which side I had surgery on, because they immediately look at my chest”-patient
- “my life took a backseat”-patient
In one stirring story, a woman described how she processed the news. In the clinic, she had just found out that she had breast cancer. She had talked with her physician, and they had begun to put together a plan for treatment and life moving forward. Driving home, she consoled herself. She kept repeating to herself that things were going to be ok. This was something that she could handle and overcome. She had this. Until, she drove into her driveway. It was in that moment that she realized that she didn’t know how to tell her family. She wept. She sat in the car, thinking about her husband and kids.
Moments like these were particularly hard for the team to process. It was difficult hearing about the loss of control, and it was even more difficult to think about the pain and the loneliness people endured—many times alone. These were moments that were happening away from the hospital and away from the team and resources. More importantly, the moments were unexpected and unpredictable. It took an emotional toll to hear these stories, but the team knew that it had found an opportunity and a place that it could move the needle—returning a sense of control.
True to the design process, these stories fueled How Might We questions—trying to take this insight around control and again branch out and brainstorm ways to give control back:
- How might we mark the firsts that occur throughout the process?
- How might we reduce the feeling of being out of control/being overwhelmed?
- How might we enhance the feeling of being in good hands?
- How might we encourage family members to take part of the patient’s care to decrease everyone’s feeling of isolation?
- How might we provide choices that reinforce a patient’s sense of control?
The brainstorm reached far and wide looking for different ways to answer these questions and highlight the areas that could return as much control as possible. Here were the four areas that the team highlighted:
Process-There are many unpredictable moments. What if we could be there for the unexpected? This area hopes to focus on the idea that everyone should have a place to go to in tough moments so they don’t have to feel alone. While processing tough information, there is always a shoulder to lean on and an ear to listen.
Learn-There is a lot of information out there, and it can be terrifying to go through since there is no clear way to understand what is accurate or not. This area hopes to focus on providing information that is reliable and clear, so that one can learn about their individual situation at their own pace and at the level they desire.
Environment-There are times that we lose control of the space around us. This focuses on returning control of the space someone is in—whether it be visual, auditory, tactile, etc. We may be on new terrain, but there are always ways to bring a piece of comfort to these new places.
Celebrate-While on such a tough journey, it may be hard to think there is time to celebrate, but that is precisely why it is a focus. The little things that seem innocuous and irrelevant can be precisely the things that should be celebrated, because they become the easiest to overlook. Maybe it is something that seems small, but it is the foothold needed to keep climbing.
Below you can see a video that sums up the teams work to the point of reaching a first prototype:
In terms of design, these became the core design principles that each solution would try to support. The team began to bring together ideas reflecting these goals. They found resources that could be used in that initial research. Playlists were created by previous survivors with the songs that got them through the waiting and the treatments. People mentioned how oncology massages, yoga, and other therapies were pivotal factors that helped them immensely. Some ideas and items aimed to help with organizing. But, none of these compared in impact to the journal that the team had been keeping in the waiting room.
This journal—the third volume of its kind—contained the reflections and the thoughts of hundreds of patients whom had sat in the waiting room in the Breast Center. These were people who were just there for a routine screening, who had been survivors for years, who were there with a parent, or who had just started treatment. Thoughts, emotions, and words of support spilled out from one page to the next. This journal was here for anyone to read and for anyone to add to.
The team found itself at a bit of a crosswinds—with all of these very different options, how could there be a unified solution? The answer seemed to be with that journal. It was the truest representation of how breast cancer touches so many at times of different need and in different places in life. The team decided to bring many of the items together in one kit—something that could be bursting with love and care and had the potential to meet someone and be there for them anywhere along the journey.
The appropriateness of this decision showed in one of the first kits given to a patient. This moment came with a seventy-plus year old patient who had just started treatment. She received the kit and began going through its contents looking at the variety of what it held. The item she gravitated towards, however, was not one that anyone would have expected. She grabbed the iPod shuffle. The small device with the playlists created by survivors. She grabbed this item and beamed. She said that she was touched that this was in her kit—that the team did not assume that her being older would prevent her from figuring it out. This showed her how the team believed she was more than capable of handling anything.
It is still the beginning of understanding what should be in this kit, when it should be given, how it should be given, but the feedback so far has made one thing for sure—it is impactful. In the many moments that one feels like they are losing control in this process, this is something that helps to bring it back. One may not always be able to predict when and how, but, in moments when one needs a hand, one must know that there are many that are available—hands that are good and hands that are ready to help.