Client: CancerGuide, NYC
Team: Jennifer Hudock, Alessandra Garcia, Jordan Chan, Quinn Devlin
Duty: Test and redesign existing website
Project Length: 3 Weeks
Our Starting Point
The first step in our research is understanding the problem at hand. We wrote a hypothesis of what we believed are the issues with the cancer process. Later we listed assumptions that we all held as to why we felt the way we did in the hypothesis. Using this information we created a quick summary of our problem.
“We hypothesize that patients and their caregivers are overwhelmed by the complex system of cancer care and would find more on-hand resources helpful.”
- Cancer terminology is daunting and complicated
- Steps in your cancer journey are confusing and not necessarily linear
- Experiences with the cancer care team can feel uninvolved and/or limited (time, scope, emotional support)
- Cancer screening is prioritized for certain disease types and groups
- Information about cancer and treatment isn’t always provided in a way that is easy for the patient to understand
- Patients may experience side effects that their care team doesn’t know about
How might we help cancer patients and their caregivers feel empowered when managing their cancer journey?
Lets Dig Deeper!
Goal of Research
To gain the perspective of caregivers, family members, friends, and patients.
To understand how our problem exists in the world
To get insight on how people feel about electronic health records
To learn in depth about the cancer process
User Interviews Methodology
We ran 12 interviews with individuals asking questions about their journey or relationship to cancer. We began talking to patients, healthcare professionals, and family members to get the perspective of those with experience. Multiple interviewees pointed out the issues they had with the next steps, cancer terminology and resources, treatment options, side effects, and support. Together as a team, we organized the responses we received to start pinpointing the biggest trends within our interviews. The trends we found corresponded to CancerGuide’s core principles.
What We Learned
After our user interviews, we organized the feedback we got and recorded the common threads. We used these observations to inform possible features. We further debated on these features by using different methods of organizing our ideas. Since not every feature can solve a problem, we had to go through a process of leaving some out and trying to focus on what would answer the user's concerns.
Feature Prioritization Chart
We utilized the MoSCow map method and feature prioritization method to start editing our list of feature ideas. These tools provide simplified ways of prioritizing by putting ideas in different categories. Then plotting on a chart to see what would need the most effort and is necessary.
Meet Eddie and Sasha!
Since Cancer Guide works for patients and caregivers we created two different personas who fit both roles. This was because while they have similar needs and goals, we noticed there were two different situations. To deliver both account views we need to consider all user possibilities.
"Treatment is becoming more scientific and formulaic"
Location: New York City, NY
Cancer: Stage III, Non-small cell lung cancer
Eddie has recently been diagnosed with stage III non-small cell lung cancer. He and his family have no experience with cancer so they have to rely on his care team to provide him with his options, information, and more. He began his treatment and had begun experiencing harsh side effects that have affected his work and life at home. He desires to be informed and empowered to understand his diagnosis, side effects, and treatment options. His goal is to cope with the pain and emotions during this turbulent time in his life. He struggles with understanding the information, finding the right care team, and anxiety. How can we help patients like Eddie through this?
• Be informed enough about the options to feel confident in treatment decisions
• Know how to cope with negative symptoms and emotions
• To communicate honestly and accurately with care team
• Clear information on treatment options
• Know the next steps and what needs to be done
• Have a supportive and available doctor/ care team
• Information can be overwhelming and confusing
• It takes trial and error to find the right care team
• Options and diagnosis created feelings of anxiety and fear
“I don't feel like someone is advocating for you or telling you why things are the way they are”
Location: New York City, NY
Cargiver: Father diagnosed with Lung Cancer
Sasha became a caregiver when she found out that her father, Ron, had been diagnosed with lung cancer. She decided she was going to do everything she can to take care of her father during this time. She is new to cancer care and wants to get educated on the process and treatment options. She wants to keep in contact with his care team and help him communicate what he is experiencing. She takes over logging how often his father is taking his medication as well as his side effects.
She needs clear information of diagnosis and treatment, resources for the family, and have a supportive medical team. She is struggling with navigating the new information, she can’t always talk to the care team and wants to help but the path isn’t always clear. How can we help caregivers like Sasha?
• Be informed enough about the options to feel confident in treatment decisions
• Have different mechanisms to best support patient
• Be aware of support groups for patient as well as all family members
• Clear information of diagnosis and treatment options
• What resources will be made available for family and patient
• Have a supportive and available doctor/ care team to answer any questions
• Results and information are hard to navigate
• Care team isn't always available to talk to
Wants to help but how to help isn't always clear
Throughout the rest of the project we focused mainly on Eddie, the patient. Eddie's journey goes through his emotions from the point of experiencing symptoms to remission. The chart below shows what Eddie is experiencing through his diagnosis and treatment, there are lots of lows within this journey. We believe it's important to understand and emphasize with the user especially during a time like this.
- From point of symptoms to remission
- The journey includes extreme highs and lows
- Highs are related to treatment and hope
- While the lows related to diagnosis can't be solved we can understand what will help people navigate the situation
Getting a User's Perspective
CancerGuide was able to provide us with an existing prototype they had built out. We did our first round of user testing on the first prototype to get an idea of how people were interacting with what exists. As well as, asking them to provide any feedback they have.
We gathered 5 participants to walk through the existing prototype using 6 scenarios and tasks. We timed and monitored their behavior to see if they took the paths we expected or not. During the tasks, we asked the interviewees to say aloud what they were doing and why to understand how they were thinking about using the site. To end, we asked them to rate the easiness of the tasks on a scale of 1 to 5.
- You just got diagnosed and your doctor informed you that
your biopsy results are available in your hospital record.
- You are scheduled to meet your primary oncologist and want more clarity on your condition.
- You are interested in seeing what care centers are near you.
- You are scheduled to see your doctor to discuss your treatment
- You are feeling alone on the cancer journey
- You started chemo and have been feeling queasy.
- Login with your username/password and link to the hospital system to the platform to streamline data.
Link your third party online records with your CG account
- Review what you might want to ask about at this visit.
- Locate nearby centers recommended to you.
- Locate alternative possible procedures that you can consider.
- Find a way to connect with a group.
- Log this reaction you are having.
- Connecting EHR was unclear and hidden in "Edit Profile"
- Horizontal navigation incorrectly represented the cancer journey as linear which confused testers
- Testers didn't know "institution" section was for finding medical centers
- Alternative treatments and clinical trials section got mixed up with one another
- Testers stated that the community pages only having external links felt like a work in progress and expect more
- Testers commented that language and images could be more inviting or empathetic
Further Understanding Our Problem
Our research provided us with additional insight on the frustrations users face, which helped us to reframe our initial understanding:
Problem: Patients and their families are subject to a massive amount of stress and emotions and need a way to learn more about the diagnosis and the ramifications of the disease. There are many unknowns and unexpected issues that arise.
Persona: Eddie is a recently diagnosed cancer patient who faces several challenges. To help alleviate his anxiety he wants to know his treatment options and needs a clear idea of the next steps.
How might we help Eddie, and other cancer patients along with their caregivers, feel more informed about their cancer journey?
Utilizing Our Findings
To begin the design process we all go together to start sketching some ideas for new interface possibilities. We called this session a design studio. We had everyone sketch as many screens as they can for the problems we are trying to solve. The rough sketches are made to get quick ideas and borrow from one another. We stuck to drawing out the activity page, diagnosis page, treatment page, and community page.
- Everyone agreed on a guided pop up on boarding process
- Everyone removed the double navigation views
- Left navigation was popular
- Ideas about using charts to show information came up and was later used
- New ways to show the daily check in were shown
First Design Iteration
After our design session we all started building wireframes of the best ideas. From there we all started building out our updated pages. We focused on landing, my activity, onboarding, my treatment, my diagnosis, community, and care center. After we finished this first iteration we decided to test it to see if the improvements showed improved results.
The new mock-up includes:
- Left navigation orientation with 7 categories
- My activity, my diagnosis, my treatment, care center, community, care team, and logout.
- Updated visualizations - stock images with real people
- Drop down menus
- Interactive material on pages (videos, charts)
- Community page with ways to connect with other users
- Map on care center page
- Utilize more compassionate language
Updated Design Usability Testing
Using the same tasks and scenarios from round 1, we gathered 5 new users to run through our updated prototype. We learned a lot about what we implemented and found some more room for improvement. We were thrilled to find out that our success rate and easiness rate did have improvements.
- Testers commented they thought there would be more on-boarding steps.
- Testers commented it would be nice to get an introduction to each page before having to search for what the elements do and why.
- Testers desire clarity on visualized time aspects on my activity and my treatment.
- Some testers clicked on the care team believing they would have to consult a doctor about alternative treatment.
- Some testers navigated to the treatment page for logging side effects.
- Interactive elements confused some testers.
After our second round of testing we began making our updates for the final prototype. Our final prototype includes working elements, the style guide given to us, and all the components we planned to improve. The prototype starts at the landing page after clicking create an account the onboarding process with be prompted and the user will guide through the signup process and open to my activity page. Once logged in the information would connect to the patient electronic health record so the user won’t have to fill in a bunch of information about their diagnosis and treatment.
Going forward we parted from the team with a list of recommendations and next steps for the updated prototype. We recommend that the team is able to complete these within the next few months!
- Test the new prototype and compare score cards
- Adjusting pronouns for non-patient users
- Including chat features for patients to communicate with other CancerGuide patients as well as their care team
- Gamifying check-in with more delight within the interface
- Refining side effects and symptom capture to include severity scale- perhaps utilizing NCI common adverse event criteria (CTCAE) as this is a standardized method to capture patient-reported outcomes.
- Include a questionnaire for patient-user preferences to allow for even greater personalization and controllability before other users are invited
- Provide language/ translation options
- Account for accessibility items such as speech-to-text transcription, alternative text for visuals/ videos for visually impaired users, etc.