LOOP Blog

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.

I have been part of the PAC since August 2016. Getting started, I never knew that joining the PAC would be so life-changing for me. I never dreamed of being a part of something as innovative as I believe ImproveCareNow is. From my perspective, no other healthcare network has accomplished so much as ImproveCareNow. As a patient, it allows me to boast on those accomplishments, and it motivates me to work harder in doing my part to grow the network. Wait, but what is my role? The patient’s role?

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. 

Recently, we completed Social Media Week leading up to the Spring 2018 ImproveCareNow Community Conference. PAC Social Media Week is a time before a Community Conference, when we like to engage ICN members and the IBD Community and generate enthusiasm by sharing a personal and highly-focused series of quotes, pictures and stories. In the past, we’ve addressed questions like "What is your IBD story?" "What or who motivates you to keep on fighting?" and "How do you/or the PAC raise awareness for IBD?" This year we focused on the core values of ImproveCareNow. With the help of PAC members, we were able to compose a post for each day, sharing a core value and what it means to them.

Here are some #ICNCC18S PAC Social Media Week highlights:

My son was diagnosed with ulcerative colitis in 2014, at the age of 13. Fast forward to 2018, and I am thrilled that he is in remission and a thriving 11th grader juggling AP classes, SATs, extra-curricular activities, college tours, and yes, medication adherence. However, I’m also here to tell you, it has been a journey to achieve and sustain remission. Like so many of you, my mind raced with a litany of questions for days, weeks, and months after his diagnosis…IBD? Ulcerative colitis? What? No cure? How did my son get this? Next, guilt set in and then more questions…Why had I not heard about IBD before his diagnosis? Is this genetic? Was it the foods I prepared? Could I have prevented it? I was so distraught. I could not fix this, not this time.

The past few months, I’ve been working with my ICN center to create a series of ‘College with IBD’ handbooks. These handbooks are meant to help guide patients who are beginning the transition to college, or to provide additional support those already in school. I wanted to take the difficulties I experienced (and subsequent knowledge I gained) and create a resource that would support others in areas where I wish I’d had more guidance.

Hi, I’m Linden. I’m 14, love Broadway music and being part of the show choir at my high school, and I have Crohn’s disease.

I’m Dr. Ashish Patel, Director of the Southwestern Pediatric IBD Center at Children’s Health^SM and Associate Professor of Pediatrics at UT Southwestern. As a physician, I’ve seen firsthand how important it is for patients and their families to have a positive, supportive partnership with their care providers.

ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person conferences provide an opportunity to work on developing and spreading QI and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

April 26-28 we will welcome patients, parents, clinicians, researchers, improvers, collaborators, and friends to the Spring 2018 Community Conference in Dallas, Texas and we hope you’ll join us too.

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.