Learning isn’t always fun but accepting that you live with a chronic disease can be downright terrifying. Whether we like it or not, we must do our best to become familiar with the ins and outs (no pun intended) of a life where IBD plays a huge role.

A few months ago, I graduated from the Umeå Institute of Design in Sweden, with a master in Advanced Product Design. For my thesis I attempted to translate my own Crohn’s disease experiences into something which could help others. I think I succeeded and would love to share the outcome of my master thesis – Pling – with everyone.

On June 5, 2017, my single, overweight suitcase and I boarded a plane flying from Miami to London Heathrow. Over the course of the next six months, I shadowed and worked with the IBD Team at Great Ormond Street Hospital, a tertiary children’s hospital in the center of London. As a Political Science major who intends to go into medicine, the opportunity to study how IBD patients were being cared for under the UK’s health system was too enticing.

When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on June 13 between 4:30 and 8pm ET for our Spring 2018 Virtual Community Conference. Read more to see the agenda for this event. 

The PRODUCE Study is now officially enrolling eligible participants. Four ImproveCareNow centers, including Seattle Children’s Hospital, Stanford Children's Health, Nemours Children's Health System - Wilmington, and Children’s Mercy are actively recruiting participants. The remaining seven centers should be recruiting participants by May.

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. 

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.

In ImproveCareNow we believe in "sharing seamlessly and stealing shamelessly," which essentially means if someone has an idea and develops something useful, it is shared widely so others across the network can benefit from their work. Our culture of generosity and sharing allows us to spread new ideas and innovations quickly, so they can impact many more lives.

We maintain a selection of tools & resources on our website, which can be accessed at any time. Here are a few highlights and recent updates.

When someone thinks about design, most likely this person associates it with the aesthetics of an object. This is not wrong because creating an aesthetically pleasing product, digital or physical, is part of the profession. But it is much more than the looks of a solution for an identified problem. Design has so much potential to strengthen and give power to a group of people and I am making it my mission to maximise this potential, rather than just focusing on the looks of a product. There are a lot of good examples of how ethnographic research, co-creating solutions with patients & experts, following trends, prototyping and iteration based on user testing can create fantastic product solutions. Because of that, I am exploring the benefit of design for paediatric IBD patients, who unfortunately will have a whole life of disease management ahead of them. Currently, I am working on my master thesis in Advanced Product Design at the Umeå Institute of Design in northern Sweden and hope to work together with you!

My name is Daan Hekking, I am 24 years old, born in The Netherlands and was diagnosed with Crohn’s disease when I was 18.

My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.