Cancer survivors and their families and friends who are currently fighting cancer often describe their experience as devastating and overwhelming. Based on the National Cancer Institute’s data, approximately 39.6% of men and women in the US will be diagnosed with cancer at some point during their lifetime. One of the biggest issues with the cancer experience is the ambiguity of the process. Oftentimes, people feel lost, alone, isolated and unsure of what to expect: they don’t know what will happen next, what resources are available or who to talk to.
This project clarified their process by visualizing the cancer experience for patients and their loved ones with a Cancer Experience Map. It enabled them to understand where they currently are in the journey and what possibilities they have to plan and prepare for the coming challenges. It also allows service designers and healthcare providers to see the different stages of stakeholder relationships, and take an empathic approach by immersing themselves in the cancer experience from a survivor's perspective.
Understanding the current experience allowed the project to deliver the Desired Survivorship Experience Framework, which is a framework that not only visually communicates the holistic desired survivor experience, but also enables service designers and healthcare providers to work together, generate new ideas and bring more comforting services that are supported by rigorous research, as well as evaluate existing ones to improve the lives of survivors and their loved ones.
This project started with a question: “How can Service Design help cancer survivors and their loved ones to improve their cancer experience and quality of life?” The focus was understanding the current cancer experience; survivors’ and their loved ones’ needs and wants were key to finding solutions. This project visualized the entire journey of the high-level cancer experience with a Cancer Experience Map (CEM) and created a Desired Survivorship Experience Framework (DSEF) to empower service designers and healthcare providers to work together, generate new ideas and bring more comforting services, as well as validate and evaluate existing ideas, to improve the lives of survivors, their families and friends.
1. In-depth Interviews
Thirty-one stakeholder interviews and two expert interviews were conducted from March to July 2015. These interviews provided a deeper understanding of cancer survivors’ and their loved ones’ needs and wants, as well as perspectives from experts with years of specialized experience in healthcare design and caring for cancer survivors, their families, and friends.
2. In Context Immersion
Immersing myself in the context to meet survivors where they live, work, and socialize revealed new insights and unexpected opportunities. I spent several days joining survivors’ support group meetings. This allowed me to see survivors’ perspectives and gain true empathy through being with them in their real-life settings and doing what they normally do such as volunteering at a cancer race event. These immersion activities provided this project with informed intuition that was applied to research insights and future design.
3. Co-creation Activities
10+ co-creation session and workshops were conducted during different phases of this project based on different needs and goals in each phase. One of the main objectives was to explore and co-create a CEM to bring in clarity from various stakeholders to understand what the current cancer experience looks like and gather a broad range of perspectives in the process. Many of these sessions were conducted at the Curtis & Elizabeth Anderson Cancer Institute at Memorial Health University Medical Center. These workshops also provided opportunities to engage different stakeholders in a series of conversations about the topic with prominent healthcare practitioners.
A 160-inch long by 45-inch wide CEM was co-created with social workers, nurses, other hospital staff and caregivers during these sessions and workshops. It identified high-stress points, patients’ energy level changes, emotional changes, different potential pathways based on each decision-making point, and various relationships and interactions among stakeholders within each step throughout the whole cancer journey.
4. Analyzing, synthesizing data and identifying patterns and themes
1500+ data points were collected and sorted. Patterns and themes were identified through the process. The affinity diagram shows that nine common themes emerged from the research, revealing insights that some stakeholders like healthcare providers were notaware of, such as why some survivors knew there was help available but wouldn’t take advantage of it.
5. Translating Insights
Insights gathered from the research were translated into a DSEF, a tool that facilitates communication, awareness, and innovation in cancer care. It is grounded in engaging, actionable insights from the voice of cancer survivors, enabling service designers to view the current issue from an alternative perspective and work together toward a desired future vision.
6. Prototyping and Testing
The DSEF was presented and tested within the design community for critique. The workshop was conducted with service designers to refine and improve the framework. 80+ service concepts were generated by using the framework. User pain points were quickly identified, addressed and incorporated into the final solution.
Two main outcomes of the project are the Cancer Experience Map (CEM) and the Desired Survivorship Experience Framework (DSEF).
For survivors, families & friends, this project brings clarity to the anxious cancer survivor and their loved ones. Knowing what to expect and how to prepare for it brings certainty to the experience. Survivors and families can learn about the cancer journey through the CEM to see where they currently are and what is coming next. They can draw their own journey on top of the map and use that to keep track of their progress. They can even use it as a visual tool to communicate with their health providers efficiently and productively about their questions and concerns. They could clarify their limitations and preferred pathways, and quickly build trust through effective communication.
Service designers and healthcare providers can easily find the pain points, the most emotionally intense period for survivors, and other important information to understand the current cancer experience by looking at the CEM. In the meantime, they can use the DSEF to envision a better post-treatment survivorship by achieving survivors’ desired life state and key emotions. It can also help them brainstorm feasible, actionable and desirable new ideas and examine existing services to see if they fulfill survivors’ physical and emotional needs. DSEF also facilitates conversation and collaboration among different stakeholders by providing them the shared knowledge of survivors’ desired experience from survivors’ own voices in order to bring different stakeholders to the same page.
As proven by the tests carried out by this study, this project enables healthcare providers to visualize the cancer experience in ways they haven’t seen before. It allows them to efficienty communicate the potential pathways for cancer survivors and the support they might need along the way. By using the Cancer Experience Map they assisted cancer survivors and their families to make informed decisions within their cancer journey. Also, by a conservative estimate, if one social worker at a cancer hospital interacts with 3 newly diagnosed survivors each day, that is 60 patients a month, and 720 a year. With the understanding that these 720 survivors are not only represent themselves but also 720 families behind, in only one year, the impact of CEM on social workers alone could number into the thousands. Multiply that by the number of providers in one cancer hospital, and then the number of cancer hospitals in the US, and the full impact of CEM is enormous.
However, the project is most powerful when the two pieces are presented together: the current experience (CWM) and the desired experience (DSEF), showing where we are and where we could be with cancer care. And in between these two pieces is the space for creativity and innovation, powered by reliable insights from the research that represents the voices of people who fight cancer in their daily life. This project opens the door for more service concepts, promising outcomes and attention to cancer care.