How can we help the Sickle Cell community cope with the disease in daily life?
Cincinnati Children's Hospital
Sole UX Designer
Strategy for product concept, user research, developing UX, coordinating with developers, designing UI systems and interface
Figma, Adobe Illustrator, Adobe Photoshop, MS Word
What is Sickle-Cell Disease (SCD)?
SCD is a blood disorder we inherit from our parents that causes you to have a low red blood cell count (this is called “anemia”). SCD affects the red blood cells and causes them to become hard, sticky or “sickle” (half-moon) shaped.
Articulating the problem
Cope is a health monitoring app for Sickle Cell patients and families to engage with everyday.
The homepage features upcoming appointments, tracks daily health fluctuations and provides a curated list of readings for the patient/caregiver.
Sickle cell patients heavily rely on community response and review of treatments. The community forum provides a support group beyond medical support from the hospital.
Daily health monitoring provides insights about their experience with Sickle Cell Disease. It also contributes to fill the gaps in research about the subject.
LEARN THE LATEST
Bearing in mind the educational purpose of the strategy, the app provides a curated learning section that houses readings from new research to news.
Understanding the stakeholders
The task was to design a multi-media strategy for disseminating latest information on Sickle Cell Disease and its treatment options.
I identified 4 different stakeholders with unique goals:
• Immersed Ivy is a sickle cell patient and is the most involved in learning about the disease.
• Caregiver Cara is the patient/guardian/relative of the patient. They take the role of the user in cases where the patient is a dependent.
• Expert Ellen represents doctors/physician extenders/hematologists who are working with SCD patients and families.
• Educator Eva is the community around the patients who are advocating through first-hand experiences with the disease.
USER GOALS GUIDE SOLUTIONS
I plotted the unique goals of each user in the framework pictured on the right.
I broke down the needs into individual short-goals and sampled the messaging or 'voice' for each goal. This helped me narrow down the features each goal requires, which informed the decision of which kind of medium to adopt.
BUILDING USER STORIES
The user story of the patient and doctor was articulated in a consistent template:
As a ............, I want to ......... so that ............
DEVELOPING A PRODUCT ECOSYSTEM MAP
The aforementioned problem areas were addressed with a diverse system of strategies targeted at different user goals and personas. A system of 6 strategies was designed ranging from analogue bookmark handouts to a daily monitoring app - COPE.
Patients/parents and doctors emerged at the shared position of contributors to and consumers of the daily monitoring tool.
I designed and facilitated a usability testing workshop with the stakeholders of sickle cell disease at the Sickle Cell Disease Association of America conference 2019.
(I made doctors play with post-its!)
Building concept mockups
The design process started with the minimum viable concept - a raw information delivery system as a combination of an app and 2 websites. It was built specifically for presenting to stakeholders for early feedback.
Facilitating a usability focus group
I designed and facilitated a usability testing workshop with the stakeholders of sickle cell disease at the Sickle Cell Disease Association of America conference 2020.
They were divided into 3 groups:
#1 Blink Test
Are we delivering the key messages?
Show the homepage for five seconds and ask the participants to write the first 3 elements that stood out to them. This is done to test the efficiency of the key messaging of a tool.
In this case, several participants wrote words describing how they felt when they saw the page.
#2 Card sorting
What's most important to you?
Each participant was given a set of shuffled cards (post-it notes) with different categories of content. Each group was asked to use the cards and add their own titles to build a unique learning path suitable for their user group.
1. Patients/parents saw the journey as non-linear with parallel tasks.
2. Patients/parents added Self Advocacy as the #1 topic they wanted to learn about.
3. Patients/parents unanimously voted 'write to doctor' out of their list, as they said it had been invaluable in the past.
4. Community members added 'pre-success stories' or process stories to their list.
5. Doctors created the most concise list of 8 topics they wanted to study in a linear fashion.
#3 Scenarios & Tasks
Can you get from point A to B?
To identify roadblocks in going from point A to B, participants were given scenarios cards with tasks on them. Each task tested the usability of a particular key feature of the tool.
1-2 participants navigated the task
1 participant kept record of time
1 participant ket record of the number of steps
Facilitator kept record of any roadblocks, observations, insights, questions, etc.
The test was audio and screen-recorded for analysis
I conducted the workshop with the help of two co-facilitators: Dr. Lori Crosby and Yolanda Johnson. The steps for facilitation were detailed in the protocol.
In the study report, I detailed the successes, partial successes and failures of each activity. I also derived insights of the evolving project goals from the user's perspective.
Key insights from the users
System of adoption
An in-depth monitoring and support platform for patients and caregiver (parents of patients, guardians, family) to study latest news and information about sickle cell disease.
1. Daily monitoring insights
2. Connect with community
3. Learn latest information
A user may sign up as a patient of Sickle Cell Disease or as the caregiver of a patient. This tiered access is added for patients under the age of 13 to be monitored by their caregivers.
While the content stays the same, the language is customized to the experience of the user.
Logging daily health
The daily monitoring simplifies the process of logging multiple data points on a single screen with contextual interactions. Micro-interactions like the expanding slider with success messages provide immediate successful logging feedback.
Scenario: Pain Alert
As soon as a patient reports a pain level higher than 5, an overlay requests if the user observes any combined symptomatology, that is potentially fatal. If the patient reports even one of the symptoms, they receive an alert to call their doctor and discuss this condition immediately.
Scenario: What do I do when ?
If experiencing any symptoms, a patient may search directly from the homepage. The search experience includes frequently searched topics and recent user searches. As a result of the search, the user receives a recommended resource (for eg, CCHMC doctor's guide) followed by community posts on the topic. The community posts will be filtered by credibility - if a user is a verified source or how many people found their post helpful.
Measures of Success
• Patients report positive trends in their awareness of the disease.
• Patients log daily activities.
• The data populating the doctor's dashboard provides new insights into the disease.
Developing frameworks accessible to non-design audiences
Designing a focus-group workshop protocol
Training non-designers to conduct a design workshop
Developing concept mockups for early need assesment
Managing client (doctor) and user (patient) needs
Optimizing time with users for actionable input
Community forum can be strengthened and tailored to Sickle Cell Disease patients and families.
Patients were most interested in self-advocacy. This indicated a possible gap in the information the doctors and patients have. Features like blogging and journaling can be introduced to enable self-advocacy.
Since the journey through the disease is unique for everyone, personalization can be improved through adding collections, recommendations and progress-tailored learning activities.
The community is devoted to contributing to the research around the subject, to help improve future developments in treatment. The app could extend to become Cincinnati Children's Hospital easy recruitment platform for clinical trials.