Cancerbase: building life stories
Incentivizing continuous patient data collection for Cancer research
How might we create a platform that incentivizes CancerBase patients to continuously upload their data?
Created "Life Story Builder": A platform for patients to be able to build out their life story to share with their family and communicate key metrics needed for cancer research.
Redesigned website and logo
Team Members: Sonika Patel, Landon Brand, Racquel Fygenson, Brianna Doyle and Naylee Nagda.
In-field user research: Talking with patients, doctors and researchers at Cancerbase labs.
Online user research: Participating in twitter chats and cancer forums.
Conducted an analysis of their current data platform
Co-led the synthesis of the information: developing themes and insights
Co - led and participated in the ideation and prototyping sessions.
Created mvp constraints for the new data platform (Life Builder Platform).
Designed Life Builder Platform Prototypes.
CancerBase is a research lab at the University of Southern California. It uses crowd-sourced patient medical data to model the progression of various types of metastatic cancer. They rely on the continuous flow of data information to make impactful medical discoveries. However, patients were lacking an incentive to visit the website and consistently upload their data.
To help retain users, our team created Life Story Builder; a platform that allows cancer patients to document their life story via prompts. By offering catharsis to patients through the means of daily journaling, researchers would receive continuous user input and gather the data they were looking for. In return, the lab would gain metrics crucial for ongoing research such as patients daily symptoms and any changes in their medication/treatment.
We also sought to create a visual identity that was visually engaging for CancerBase website visitors, patients and researchers alike. We believed that a strong coherent identity was critical was CancerBase; a professional, patient-facing, and engaging institution.
Stage 1: Redefine the Problem
In order to understand the type of data the lab was collecting, our team spent several weeks at the CancerBase labs learning about various testing procedures, the nature of their research and why long-term data was important for them. We learnt about the basics of cancer progression and key terms like "metastatic." Talking about cancer with patients and survivors is a sensitive subject hence it was crucial for us to understand key vocabulary, phrases and having a basic understanding to follow their journey with cancer.
We then had initial conversations with patients who regularly uploaded their data on the CancerBase website and those who dropped off after the initial upload. We were curious as to why they provided their data? And why did they stop?
From our conversations, it became evident early on the that due to the design and navigation of the website, data input was an arduous process. Even the most passionate were dropping off mid-way as they found the website overwhelming and unappealing. This initial stage helped us reframe our challenge to "How might we create a platform that incentivizes CancerBase patients to continuously upload their data".
Stage 2: Immerse
Before diving into redesigning the data platform application, we wanted to understand how to make uploading data an effortless activity that would fit into the lives of cancer patients. We spoke with patients, survivors and families to learn about how the support eco-system for various patients looked like post-diagnosis. We were interested in changes in their lifestyle, routines and priorities.
We also visited the houses of survivors and took pictures of their everyday staples. We noticed a similarity in "soothing" items ranging from diffusers to coloring books and yoga mats. During our conversations, we heard a lot of patients talk about brain-fog after treatment sessions, forgetfulness, fatigue, and a change in energy levels. We started to take note of how they coped with mental and physical changes.
A cancer patient shares her everyday staples since diagnosis. A yoga mat, swimming kickboard, essential oils, massage oil, a wet towel for hot flashes, a journal and a scarf.
Some of the questions our team used to conduct user research.
Stage 3: Sense Making
After our interviews, we sat down to make sense of what we had learnt, observed and heard. We created affinity diagrams and started to notice trends and similarities. Some of them where:
- We realized that storytelling and journaling are important for a patients mental health. Patients wanted to be remembered for who they were before their diagnosis of cancer and share stories about their life.
- Patients, survivors and caregivers actively seek out experiences that are cathartic, empowering, community oriented, engaging, enjoyable and relaxing.
We then identified these key insights that we referred back to during our ideation and prototyping phase:
- "Even to this day, when I read my journal entries about my fears, anxieties, and the other feelings I had about my initial cancer diagnosis, the cancer has less power over me."
- "I deleted all the apps on my phone that were complicated to use. I was already going through one complicated thing in life, I didn't want more."
- "It was really hard to find information about what treatment options those with my type of cancer underwent. I really had to seek out people and I finally found one woman halfway across the world in Melbourne."
A snapshot of our team grouping our learnings from interviews with patients, care-providers, survivors and family members.
We grouped our insights into the following categories: What did cancer patients think, feel, and do during their cancer journey.
Stage 4: Ideation
After synthesizing our insights, we wanted to carry out an ideation sprint. In order to step outside ourselves and remind us about the needs, experiences and goals of the users we were designing for, we created personas. These personas were helpful for jogging our memory about the in-field conversations we had and made our team feel passionate and connected to purpose of the design challenge.
The user personas our team created.
We then facilitated and participated in an ideation sprint with the Cancerbase team. To guide the sprint, we created the following leading questions:
- How might we make data input as stress-free as possible?
- How might we make make data input joyful, empowering, relaxing??
- How might we offer value from data input?
One of our most effective ideation activity was playing a game of mash-up. We listed items we observed in the lives and routines of Cancer patients and paired it with one of the leading questions. This approach helped us get creative whilst discussing a wicked problem and even led to some crazy ones like a diffuser that would create a custom scent dependant on the emotional data the patient inputed into the data platform!
At the end ot the session we had ideas ranging from preserving patient friendships by creating a buddy system to gaining data credits to shop from amazon. Whilst we had numerous feasible and interesting ideas, the following quote from our sensemaking phase really stood out to us during our ideation process:
" Even to this day, when I read my journal entries about my fears, anxieties, and the other feelings I had about my initial cancer diagnosis, the cancer has less power over me " - Barbara Tako, MBC survivor and blogger
Barbara's quote coupled with our observation of journaling and storytelling formed the foundation of our idea: offering catharsis. By offering catharsis to patients through the means of daily journaling, researchers would receive continuous user input and gather the data they were looking for. The value for our client was based off of patients' daily logging of symptoms and changes in their medication/treatment, crucial for CancerBase's ongoing research.
We had found a two-way value system that we were ready to test!
These are some of the ideas from our ideation phase
Stage 5: Defining our idea
In order to refine and define our idea of providing catharsis through journaling, we wanted to research what products existed in the two eco-spheres of cancer data and online journaling.
We found that current cancer platforms were difficult to sift through and were not personalized and relaxing. In the journaling world, existing platforms were not tailored for cancer patients or for data collection. The platforms focused on recent event journaling activities, had a poor user interface flow and did not consistently motivate the user to update their journal.
Screenshots of some of the products we found in during market research
After several rounds of research and iteration, our team developed the concept of Life Story Builder. A platform for patients to reflect and build out their life story via given prompts whilst communicating key metrics needed for cancer research. The stories would then be shared with friends and family in a memoir-like format
We then created the following low-fidelity workflow of how we envisioned the application:
Low fidelity user navigation flow of the application
A list of prompts for patients to reflect about
From our market research, we segmented our target audiences into the following groups:
Patient or Survivor
Age: 50 -75
Male or Female
Tech-savvy or have an online presence.
Role: Direct; for personal reflection to share story with family.
Age: 25 -35
Male or Female
Involved in online care-giver groups
Role: Indirect; writes for older patients, makes patient feel heard.
Age: 20 -40
Male or Female
Cancer advocate or Patient's loved one
Role: Indirect; reads patient's stories and bonds with patient.
Through our field research, we imagined the following use case scenarios for Life Story Builder.
Use Case #1
A patient, aged 66-75 who lives independently would use Life Story about 2-5 times a week. She uses it on her own time to reflect upon her life. She most likely would use a laptop or desktop at her house.
Use Case #2
A child or grandchild, ages 15-45. She uses Life Story whenever they spend time with a family member who has cancer. Life Story serves as a way to collect stories about the family's past. The family member will record the story on their phone as the patient speaks, and then upload it into Life Story Builder.
Use Case #3
A patient is paired with a grandchild or caregiver. Together, they use Life Story to craft and archive the patient's memories. They would work on a laptop or desktop to write up and edit the stories.
Stage 6: Co-creation and testing
We then went through several rounds of prototyping and co-creation with researchers at Cancerbase and cancer patients. We did this to ensure that our application would collect the relevant data that was needed by Cancerbase and it would meet the needs of patients.
This process also helped us flesh out the tech requirements of our application. We initially wanted to build a chrome extension, but we found that our target demographic of metastatic breast cancer patients, would most likely use a safari-based website, as opposed to an extension or mobile -based solution. Therefore, we decided on making Life Story Builder a web-based journaling application.
Below are more fleshed functional mockups of Life Story Builder. The purpose of these prototypes were to communicate the concept and gain feedback.
Profile page : User populates with information about treatment and personal history.
The user is prompted to input how they feel everytime they use the platform. This data is crucial for Cancerbase research
Prompts given to users as they create journal entries about their life
Categorizing answers to prompts
A visualization of patient energy levels.
Our team then travelled to the 2018 AACR conference in Chicago where we carried out user tests for the Life Story Builder application and the Cancerbase brand. Overall, our application was met with success and approval. We gained valuable insights from patient advocates and researchers to be implemented to the next iteration of Life Story Builder. Some of the feedback we received was:
- Creating a feature to add photos. Photos are worth a thousand words and patients wanted to share photos from their past into their stories.
- The ability to record and transcribe audio notes as a form of input. Some patients have brain fog and find it difficult to write after treatment sessions.
- The capability to export their memories and stories into a physical tangible form to share with their family.
A flow of our logo design process. We started with sketches then digitalized them and played around with the colors. Final logo is on the bottom right picture.
This project helped me realize the power of good design and creating human experiences when designing products in the healthcare sector. The patients I interacted with, often described their cancer journey as stressful and frustrating due to the confusing and ambiguous information they received from healthcare providers, the internet and doctors. There is massive need to bring a human-centered approach to the healthcare sector from the way information is presented to creating thoughtful interactions with patients. As a designer, I hope to contribute more towards this sector and create friendlier experiences for a harsh turning point in the lives of many.