The strongest girl I met - User Research with Cancer Patients

After the team selection, the kickoff meeting with our client and two weeks of secondary research, the true beginning for us was facing our first interview participant on Skype. I rushed to school at 8:30 in the morning without any caffeine. I opened the interview protocol in advance and tried to simulate what was going to happen later. “bi-bi-bi” Skype phone officially linked me to a girl living in New Jersey and I took a deep breath before saying hi. Mike, our the client manager with such a delightful and adorable voice, was sitting besides me during the video call. At this point, I finally felt this project was truly kicking off. We both knew we were a little bit nervous, but what could be more exciting than talking to a real cancer patient when you are designing an app for him/her?

The girl told us that she was diagnosed when she was 19 years old, and now at 22 she was a survivor living with her mom. Even though we did a bunch of secondary research about cancer care, treatment and supporting programs, when we heard she didn’t want to join any focus group nor make friends in the hospital, we were still a little bit surprised. Why? “You know, I just want to stay positive. Nothing can be more depressing than being surrounded by other patients.” “I got information from my doctor and my mom. My mom took care of all my doctor appointments. I don’t google my disease, don’t search it on the internet. I’d rather trust my doctor.” The girl’s voice was energetic and thrilling, excited to share her story with us. Sometimes her mom would join the conversation and add on something. It was really a smooth interview; the only strange part was - that the conversation seemed too cheerful to me. I expected to see a pale face, even if it wasn’t a sad one, but still not one this happy. Her positive attitudes towards life struck me and even made me feel uncomfortable or guilty, guilty for treating her as a sick person and showing too much pity.

“Speaking with this girl also reminded me of when I learned I have chocolate cysts what in my ovaries. I read a lot of information on the Internet, and my moods or feelings swung depending on what kind of information I received. In the end, after knowing so much about chocolate cysts, I still had many uncertainties and fears. Maybe the technique she this girl developed, blocking out all the negative voices around, helped her to preserve some hope for life, some motivations for being a normal person and some ambitions for enjoying every day.

However, this was as far as I could guess. In an interview on a sensitive topic, I usually tell myself to remember the goal,. Here, my goal was to understand how an app can improves cancer patients digital and physical experience along a specific journey in their lives. I didn’t feel that digging into the emotional part and asking this girl to tell me her most darkest experience was a good idea. I probably couldn’t handle it, and also, even participant’s emotions are important, but how could a patients tear benefits the app design? Clearly, I didn’t want to cross the boundary unless she wanted to be more opened, but surprises always come. When we were about to reach the end of the interview, she started to talk about her financial situation.

“ I had two part-time jobs before, but after I got diagnosed, I couldn’t work anymore. My mom also quit her job to take care of me. We were trying to look for financial programs to raise fundings, but because I was beyond 18 years old, I couldn’t find any. In the end, I created my own fundraising page through social media.” She was still smiling like a sunflower, at least tried to, but I could feel the huge financial pressure in her family from that her voice immediately . Her voice was slightly shaking all the sudden.

It’s not difficult to imagine how much you would have to pay for a high-quality treatment in a good cancer hospital in New York. Without any jobs or financial aids, this girl basically was telling us that she is in serious debts. After this interview, I was grateful of having the chance to talk to this girl, as well as having her trust to share the first-hand experience with the team. Except a lot of thanks, we promised the girl that we are going to design an awesome app for her and for people experiencing the similar situation.