I met with Ma’am Karen Villanueva, the Vice-President of the Philippine Alliance of Patient Organizations (PAPO), for breakfast some time in 2018 as she wanted to establish Rare Cancers in the Philippines. Defined by Cancer Research UK, a cancer is known to be rare if it affects a small number of people, starts in an unusual place in the body, or if it needs a special type of treatment. Because she was working with PAPO and based on her own personal experience, Ma’am Karen found the need to establish this organization but was wondering about the gap she first needed to address. During our initial meeting, she first wanted to create something that would allow people to access treatment. Since EpiMetrics also provides design thinking services, we wanted to follow the design thinking process to carry out a successful project.

For the empathize step, we talked to patients still undergoing treatment or loved ones of those with rare cancers during a kapihan session. In research, we are used to preparing key points or a semi-structured interview guide before meeting our interviewees; however, for the design thinking process, we wanted a more free-flowing conversation. Ingrid and I attended this session, and we practiced how we should interview as prescribed by design thinking principles - less structured, more sharing of stories. It was really important for us to hear what they had to say, what they were going through, and what they needed as this was deeply personal. We veered away from asking questions about the health system, such as access or treatment, and just listened. This session highlighted what they really needed - a seamless patient journey in the midst of all confusion, stress, and uncertainty.

After this session, we spent time summarizing what everybody shared. Since this wasn’t a qualitative study, we did not undergo coding and thematic analysis. We analyzed the results using an empathy map and highlighted the needs and insights. We also coupled the interview with research on rare cancers globally. Ingrid and I were working on this together, but we knew that we needed more people for brainstorming, so we scheduled a session with our colleagues and some stakeholders abroad. We did a short ideation session and came up with almost 100 ideas. Incorporating what we learned from patients, having loved ones with the rare cancer, research, and other stakeholders helped us choose a prototype to develop.

The design thinking process was a great way for us to learn how to listen and be more creative in the field of public health. Even more, it helped us uncover the gaps in our health system and put a spotlight on those who needed to navigate it.