"Eosinophilic esophagitis" or EoE is a disease which causes white blood cells, called "eosinophils," to collect in the esophagus when a person with the disease eats a food which they are allergic to. This collection of eosinophils can cause the person's esophagus to swell shut and food to become stuck in their throat. Frequently individuals with EoE have many food allergies, making nutrition and meal time challenging.

Although the exact case of EoE is not known, an increasing number of children have been diagnosed over the last ten years. Children face special challenges related to the physical, social, and emotional issues to living with EoE. In addition, it can be especially challenging for parents caring for a child with EoE.

Working with a cross-disciplinary team of students from the University of Michigan studying health informatics, public health, and information science we collaborated to design a way to help children with EoE improve their lives. Although this solution eventually took the form of an app, we did not start with a solution in mind and instead allowed our research and design thinking guide our proposed solutions.

Project Goal: To help enrich the diets of children with EoE so that they can lead healthier, happier lives while supporting parents in providing for their well-being.

Team Members: Rachel Atwood, Kristina Halverson, Shruthi Reddy, and Wei Wang

One of our consultants on this project was a pediatric allergist. Our first step was to interview him and gain a better understanding of the disease before conducting literature review of the research surrounding EoE.

As a part of our literature review, we looked at articles addressing the care of children with other allergies and chronic care conditions, and the interventions which were used to support them.

Photo credit: Dayna Bateman

Next, we contacted an organization which was formed to provide support to individuals with severe gastrointestinal disorders, including EoE. This organization was able to provide us with further information on EoE and connect us to parents who are caring for children with EoE in different age groups.

We then conducted semi-structured, in-depth interviews of these parents, with questions addressing medical provider communication, information resources, social support, and environmental restrictions on behavior for children with EoE.

These interviews were recorded and transcribed.

Photo credit: Graham Holliday, "Interview at World Bank"

Our group then held debriefing sessions in which we shared our interview results and wrote important points on sticky notes for affinity wall creation.

Before creating our affinity wall to condense our interview results, we decided to each have a day in which we would experience the diets that some of the children with EoE to gain greater empathy with this population.

Shown in this photo is my breakfast, lunch, and dinner of formula mix during my day sampling this diet.

Often EoE children have diets so restricted they can only drink a formula mix and consume one or two types of food. On my "EoE diet" day I restricted myself to a common EoE formula mix and potatoes (with no seasoning).

After experiencing a day of an EoE diet, we came together to create an affinity wall from all of our notes

Working together to narrow down affinity categories and subcategories

Team members ponder categories for affinity clusters.

This cat is not a part of the affinity wall...

After defining major themes through the affinity wall, we each individually brainstormed design ideas to address the major concerns expressed by EoE parents.

We then came back together and presented our ideas to each other. From these ideas we selected our top ten.

Our top ten ideas were then sent to EoE parents in a survey which asked them to pick their top choices. The survey also allowed them to provide open-ended responses so that they could tell us what they liked and did not like about certain options.

Parents voiced a strong desire for an app which would help them to track food trials, or the elimination and addition of new foods to their child's diet. Food trials are conducted to determine what foods can be safely added to a child's diet, or what foods should be eliminated to reduce negative physical reactions.

Before designing our EoE app we conducted a competitive analysis to get a better understanding of the features and format of existing apps which track allergies. On several occasions we found platforms which seemed to satisfy parents needs; however when we discussed these apps and websites with parents, they commonly cited a lack of necessary features, complexity, or lack of exportability which hindered the program's use. Parents also discussed the features and content which they felt was necessary for the app. In addition, we asked them to send or take pictures of the items which they currently use for food trials.

We plan to use this information to help in narrowing our app's features. It will also be valuable in ensuring mapping between tools conventionally used now to record trials and the interface of our app.

As a first step our group we developed sketches for possible interfaces. We refined these sketches through discussion and comparison to existing health interfaces.

I then refined these sketches down to a basic sitemap. The sketches of this sitemap were presented to the parents as a very low-fi paper prototype which allowed us to walk through the app with them, test their expectations, and create quick modifications on the fly. One aspect that parents repeated emphasized was that our app needed to be simple and easy to navigate quickly so that they could use it on the fly during their busy days.

As our next step, one of my group members created a digital prototype. I then created a usability testing script which we used to test our prototype with parents of children with EoE and gather feedback.

We decided to name our app "Trail Ninja" at this point to communicate how swiftly a person could move through our app ("like a ninja") and how our app is targeted to projecting its users.

Note: The digital prototype was put together by the very talented Rachel Atwood.

Using the information gathered from our user interviews and usability testing, we further refined the interactions and interfaces of our app into the design shown above.

NOTE: The user interface on this app was put together by the very talented Wei Wang.

Currently, members of my group are seeking funding and support to develop this application for distribution within the EoE community.

So why haven't you talked to the kids?

We get this a lot (rightfully so!). We have not yet been able to speak with children with EoE due to a regular review process undertaken by our university when working with vulnerable populations (such as children). We are hopeful that this review will be completed soon so that we can interview teens and older children who could potentially use this app.