Beacon
How might we better support young adults diagnosed with Celiac Disease immediately after they receive their diagnosis?
Personal Responsibilities
Work in Progress Disclaimer
This is a project that I am currently working on. I will update the project page as it progresses.
Discovery Research
CHOOSING A TOPIC AREA
Each student who participates in the Engineering Design Innovation program at Northwestern must complete an individual thesis project. In the beginning of the project we come up with three general interest areas before deciding on one to move forward with. The three interest areas that I came up with were supporting those with Celiac Disease, supporting college students with diabetes particularly when it comes to alcohol consumption and improving educational experiences for students diagnosed with ADD/ADHD. After doing a gallery walk with my professors and peers everybody agreed that designing something to support those diagnosed with Celiac Disease had the most design energy and seemed the most promising.
Initial interest from my classmates on my original Celiac Disease idea
SECONDARY RESEARCH — UNDERSTANDING CELIAC DISEASE AND EXISTING RESOURCES
Once I had decided on this general direction I started secondary research to learn more about Celiac Disease and the resources that currently exist to support those diagnosed with it. To conduct this secondary research I did Internet searches into the disease itself, the history of the disease and current resources and solutions. Additionally, I joined various online Celiac Disease communities and practiced social listening to try and better understand what life is like for those with Celiac.
Online communities I observed
A Facebook group I was able to join
Existing resources/solutions
RESEARCH PLAN — FIGURING OUT THE WHO, WHAT, WHEN, WHERE, WHY AND HOW
Next, I worked on creating my research plan which helped guide the creation of my discussion guides when starting primary research. The research plan outlined who I wanted to talk to in terms of core vs. extreme users, what sorts of topics I wanted to gain insight into through the research, times and moments in the Celiac experience that it would be important to talk to users about, the underlying hypotheses I had about my topic and finally how I would logistically conduct my research. When thinking about the how of the research plan I outlined different research methods, research objectives, target stakeholders, recruiting strategies, tools/materials needed and timeline.
DISCUSSION GUIDES — START BROAD AND ADJUST FOR DIFFERENT TYPES OF PARTICIPANTS
Once my research plan was created, I started to write the discussion guides I would need for my interviews. I ended up writing three discussion guides for my primary research; one for patients, one for family and friends of patients and one for physicians/specialists. The discussion guides for patients and family/friends of patients were pretty similar and asked questions about the patient journey (pre-diagnosis, diagnosis, post-diagnosis), main concerns experienced, current resources used, social acceptance, adherence and going out to eat. The only difference between the two was that the discussion guide for friends and family had a section of questions about how they support their loved one with Celiac Disease. The discussion guide written for physicians/specialists asked questions about their role in the patient’s journey, patient concerns they hear, patient adherence, specific geographical questions, general existing resource questions, diagnosis and pediatric specific questions.
RECRUITING PARTICIPANTS — CREATING A DIVERSE PARTICIPANT POOL
After creating these discussion guides, I started recruiting participants for my research. I wanted to make sure that the participants I gathered for my research varied across many different variables. In order to make sure I was gathering a diverse user group I used Google Forms to create a screener. The screener asked questions to learn more about participant’s relation to the person with Celiac Disease (could be themselves), ages, geographical location, time of diagnosis, symptoms experienced, adherence strictness, going out to eat tendencies, education level, income level, religious affiliation and general support experienced. The final part of the screener asked participants if they would be willing to participate further by taking part in a virtual interview that they would be compensated for. In order to circulate my screener, I was admitted to a Celiac community page on Facebook where I posted the screener.
My post in the Facebook group asking people to complete the screener
Example screener answers #1
Example screener answers #2
Breakdown of the primary research conducted
PRIMARY RESEARCH — UNDERSTANDING A VARIETY OF DIFFERENT CELIAC EXPERIENCES
I quickly got 256 responses to my screener with 182 of those responses saying they were willing to talk further about their Celiac experience in an interview. I then used the screener responses to contact about 20 people to schedule interviews. In the end I conducted seven interviews with people who have Celiac Disease and two interviews with mothers whose children have Celiac Disease. Beyond talking to patients and their loved ones, it was important for me to talk to physicians and specialists. Due to the fact that my mother and sister both have Celiac Disease I was able to access their doctors and ended up conducting five expert interviews.
Concepting and Ideation
SYNTHESIS LED TO THREE MAIN INSIGHT AREAS
After conducting the interviews I needed to synthesize my observations. To do this I started clustering individual observations into themes. The cluster themes included misconceptions, resources, diagnosis, emotions, social aspect, travel, Celiac knowledge pre-diagnosis, support, adherence, time immediately after diagnosis, wants and hopes, transitioning to college and symptoms. After analyzing these different clusters I determined that there were three main pain point areas that came out of this initial round of research. The three insight areas I uncovered were eating out/social aspect/travel, the time immediately after diagnosis and the transition to college. Once I had determined that these three areas were of particular interest I started to outline key findings and how might we questions for each area.
NARROWING TO ONE MAIN INSIGHT AREA
At this point I decided to narrow my scope even further and chose to focus on the insight I uncovered having to do with the struggles those with Celiac Disease face immediately after they are diagnosed. There are a few reasons why I chose to focus on this insight. First of all, through discussions with peers and professors, many people felt like this was the insight that had the most design energy behind it. Additionally, a closer look at the resources patients mentioned using during this time revealed many shortcomings. The Venn diagram below shows exactly how these different resources are useful and where they fall short. When thinking ahead about the potential solution for the eating out / social insight, it seemed like it would lead to more of an educational resource for restaurants and other secondary stakeholders and I wanted to design something for the patients. Additionally, when thinking further about the transition to college insight I had fears that I might run into bureaucratic issues when introducing universities as a primary stakeholder. All of these different factors led to my decision to move forward with my insight that people diagnosed with Celiac want to feel confident and prepared post-diagnosis but they don't have the resources and support they need to do so. The guiding how might we statement that I used to move forward was: How might we create resources that are useful and effective in educating Celiac patients about their disease immediately after their diagnosis?
Venn diagram outlining existing solutions and their shortcomings
An iteration on insights and HMWs
Final insight statements used in presentation
SOLOSTORMING AND BRAINSTORMING YIELDS DESIGN DIRECTIONS
With this more specific insight and how might we statement in mind I went through a few different iterations of brainstorming. To start out I did some solo storming to come up with all the concepts I could think of on my own. To come up with some of my ideas, I made sure to think of analogous situations and solutions that exist in those areas. After I had come up with multiple ideas on my own I did a round of brainstorming with my mom and sister and a round with one of my classmates. During these sessions we made sure to build off ideas I had already come up with and came up with even more unrelated ideas. From these different rounds of brainstorming I chose a few general design directions and sketched out concepts for each. The design directions I chose were testimonials and mentorship, customized information, information for friends and family and Celiac bootcamp. For each of these I created rough sketches around the concept and then digitized them to be used for my next round of research.
Results of solo and group brainstorming
SECOND ROUND OF PRIMARY RESEARCH — MAKING USE OF DESIGN STIMULI
When starting my second round of research I chose new participants from my screener this time making sure to talk to more people who had recently been diagnosed with Celiac. For this new round of research I created design stimuli and wrote a new discussion guide with the goal of learning more about people’s experiences during the time immediately following diagnosis. The design stimuli I created for this round of research included a homework assignment, a card sort, an adherence framework activity and concept sketches. I used the homework assignment to learn more about the emotions associated with the time immediately after diagnosis and the resources people were using at this time. I used the card sort activity to learn more about what resources people felt they needed immediately after diagnosis and what the desired format of those resources were. The adherence framework activity was used to better understand where in people’s journey with Celiac they struggle to adhere to their new lifestyle. Finally, by including concept sketches I hoped to learn which general design directions were most appealing to users.
Card Sort
Homework Assignment
Concept Sketches
Adherence Framework
Design and Prototyping
SUB-TITLE
Final Solution
SUB-TITLE
Evaluative Research
SUB-TITLE
Potential Impact / Future Steps
Key Takeaways
Don’t pigeon-hole yourself in the beginning → it’s a good idea to talk super broadly to people in the beginning and then you might uncover a real problem
Don’t focus too much on frameworks instead make sure the story is being told and that you are justifying your direction → use the frameworks to help you uncover the insights and not the other way around
Contributions
I would like to say a special thank you to my professors Jim Wicks and Amy Schwartz, to my mentor Jennifer Levin, to my classmates who helped and supported me, to my mom and sister for being my sounding boards and to those who contributed through user research.