Posted by Daan Hekking on April 12, 2018
A while ago I wrote an article where I explained who I am, how I was diagnosed with Crohn’s disease, how I got to know ImproveCareNow and the plans of my master thesis. In early January I officially started my master thesis at the Umeå Institute of Design and in the last two and a half months I have gotten the opportunity to connect with experts and patients all across the world. I have organised a workshop at Shire’s office in Zug, Switzerland, where we tried to identify areas where a paediatric patients, caretakers or caregivers can be supported along their experience with IBD. A week later I attended the annual European Crohn’s and Colitis Organisation’s Congress in Vienna, Austria where I had the opportunity to meet Dr. Richard Colletti (President & Executive Network Director of ImproveCareNow) in person, along with other leading experts in the field of paediatric IBD.
In this post I would like to reveal two ideas I have developed here at the Umeå Institute of Design and ask for your thoughtful feedback to improve them. These ideas are concepts for products, which are not yet fully developed or widely available.
Before I go any further, I would like to thank the following people that made time for me and shared their insights: Alex Jofriet (Co-chair Patient Advisory Council), Sarah Meyers and Lisa Opipari-Arrigan (Cincinnati Children’s Hospital Medical Center), Michele Maddux (Children's Mercy Kansas City), Martin Rejler (The Jönköping Academy), Sarah Roord-Teklenburg (Isala Hospital) and the paediatric IBD department at the University Hospital of Umeå.
My role as a product designer in paediatric IBD
As I am not educated as a gastroenterologist, IBD nurse, social worker, dietitian, psychologist, but rather as a product designer, identifying where I can make a positive impact in the field of paediatric IBD (age 10 to 12), is easier said then done. Along the way, I have developed an incredible admiration for anyone involved in the field of IBD care. Being a Crohn’s patient myself, who has luckily been in remission for years now, it really touches me to see people passionately working towards the same goal of getting others in remission. No one wants to live a life full of flares, and working with people who create their lives around this mission, honestly increases my motivation to create a solution for paediatric IBD patients and possibly their loved ones. I can only say I am very thankful to include so many people in my master thesis and learn from everyone’s experiences.
As many of you know, educating yourself and others around you is important in order to cope with your condition and make good decisions on health.
“Health literacy is not just about ensuring that patients can read and understand health information, it is also about empowerment. Patients with low health literacy have poorer health status, higher rates of hospital admissions, are less likely to adhere to prescribed treatments and self-care plans, experience more drug and treatment errors, and make less use of preventive services. Achieving greater health literacy in the population is integral to improving the health of disadvantaged populations and to tackling health inequalities.” (Coulter & Ellins, 2007)
When I look at what I can do for patients and their loved ones, I strongly believe there is an opportunity to improve the way information is being delivered to patients. There are already some great toolkits out on the ImproveCareNow website and the reason these toolkits have been created is because there is a need for information that is more relatable and personal. I back this point of view and believe the most effective way of educating people is when the information is based on your medical history and real life situations you have encountered. Also, I have found that spending a lot of time reading texts about IBD can be challenging, especially when a person is already not feeling well because of a flare-up. There is a conflict here, where education is needed but sometimes hard to achieve. I have made it my goal to come up with a solution that allows patients to get the information they need in an easier and more engaging way, using improved storytelling and with a final goal of achieving a state of self-reliance prior to moving to adult care. The following ideas are based on these principles and target two different educational areas: the impact of nutrition and personalised learning based on endoscopic material.
1. Champ - never again a cramp
Eating food is crucial to our existence and in order to stay healthy we have to keep eating. Living with IBD can make eating more difficult, as many of you know, and finding out what you can or cannot eat takes time. Eating “trigger foods” can cause flare-ups and symptoms such as abdominal cramps, blockages, diarrhea, and could potentially lead to surgeries. My first concept, called “Champ”, is designed to accelerate the identification of trigger foods, to help reduce flare-ups and keep patients in remission. This digital application, accessible via computer, tablet or phone, allows a person to log the foods you’ve eaten. It then asks you to answer a few questions (what time you ate, if you feel nauseous, energetic, etc.) If you used this app continuously, the system will store information about how you feel after each meal. It can then detect, based on deep learning, if there are ingredients or combinations of ingredients that make you feel sick.
Champ can keep track of trigger and non-trigger foods, and can recommend dishes that do not contain trigger foods. Through Champ, I hope to be able to share endless eating possibilities with people, rather than focusing only on dietary limitations. The goal is that Champ will get even stronger as the IBD community shares their personal IBD-approved dishes. Hopefully, the result will be a catalog of IBD-approved dishes, which is formed and accessed by you.
2. Pling - educating the younger ones
Educating is something you do continuously, consciously and subconsciously. With the introduction of the internet, information became increasingly more accessible. Well-designed websites and applications allow you to filter and screen information quickly and can save you valuable minutes in an already busy life. Someone who has recently been diagnosed with IBD will be given information by his or her paediatrician. This idea is that this information will be highly relevant and should help the child and their loved ones better understand his or her disease.
My second concept, called “Pling”, is an educational tool that allows a child to learn by doing, rather than just reading. Small exercises and journeys are part of this tool and by completing these tasks, a young person will learn about IBD and its impact. The idea is that your character will receive energy points when completing an exercise. The more exercises you will complete, the more energy points you will obtain. The character will start to feel better accordingly and encourage you to do more.
Pling’s exercises can be done in many different ways, but I envision there to be a tool that allows users to “screen” or locate certain parts of the body. One of the basic exercises can, for example, be to locate the different parts of the digestive system. Using a screener, which is a low-tech tool and functions almost like a presentation clicker, the user would locate parts of the digestive system in 3D space. Information about that part of the body would then be shown on a tablet, computer or phone. The way information is being shared with the child in a personalized way, where pieces of texts are tailored to their medical records and encounters. The text should be age-appropriate and adapt to someone’s ability to understand it, rather than one text that fits all. I envision there to be different levels of difficulty, so that as a child grows up they learn more about the disease and how to be prepared for adult care. Tests can be incorporated into this application, which a child would complete before he or she turns a certain age or prior to a consult. These tests are there to encourage children to continue to learn more about IBD, possible complications, etc. The application can be used by both the parent and the child, where there is a possibility to complete exercises together, when sitting next to each other or remotely.
Watch a short explanatory video about Pling
I wrote this post not only to share my concepts (Champ and Pling) with you, but also to ask for feedback and opinions. I have about seven weeks left to complete this project and would like to incorporate as much of the IBD Community’s expertise as possible. If you have any additional ideas or ways to improve Champ or Pling I would love to hear from you! Please feel free to contact me via email or visit my website.
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