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Growing Our Engagement Community – A How To Manual

The MassGeneral Hospital for Children (MGHfC) Parent/Patient Advisory Team (PPAT) was honored to be selected for an ImproveCareNow (ICN) Patient and Parent Innovation Fund award in the fall of 2017. As a team of parents, patients and healthcare providers, this award enabled us to work together to provide valuable educational programs aimed at increasing and family knowledge of IBD, and much-needed opportunities for patients and families to network with others to share information, knowledge and know-how.

As a team, we have chronicled our collaborative, year-long journey of working together to increase the number of participants enrolled in our PPAT engagement group and formalize a model that others across the ICN Network can steal shamelessly. Our project has culminated in a “How to Manual”, which we are excited to continue sharing across the ICN Network at our upcoming Virtual Community Conference. This manual shares our lessons learned, challenges, tips, and strategies to achieve success in growing a local engagement program that will connect, support, and engage IBD patients and their families. Our hope is that the manual will serve as a catalyst to help other centers achieve similar partnerships, which will result in improved IBD care and outcomes.

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Knowledge is Power – Our IBD GROW event

Transition of care is a hot topic in our Pediatric Gastroenterology division. We have many patients with lifelong diagnoses, such as Inflammatory Bowel Disease, who will eventually need to move to adult care. In the past, transition and transfer of care have been a bit like an elephant in the room as patients near their 18th birthday. Questions are nervously broached by parents at the end of office visits: “How much longer will you see my son/daughter? Where do we go? What if we don’t want to see an adult doctor?” These encounters made our team realize that we needed to do a better job preparing patients and their parents for transition and transfer of care. The question was, where do we start?

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Helping to make a difference in the IBD community

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.

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Spring 2019 Community Conference - Mastery and Innovation

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.

March 29-31 we will welcome more than 200 patients, parents, clinicians, researchers, improvers, collaborators, and friends to the Spring 2019 Community Conference in Dallas, Texas and we hope you’ll join us too.

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We call it the "My ICN Home" shirt.

Dear Improvers,

Hi, it’s Christian – co-chair of the PAC! I’m super excited to share that the PAC has selected a design for a new t-shirt, inspired by our work with ImproveCareNow. We call it the "My ICN Home" shirt. The concept for this shirt actually came from Spring 2018 Community Conference, and I can remember flying home after the conference, visualizing a design in my head. Here we are, one year later, and I finally brought that design to life and my fellow PAC members selected it as the design for our 2019 t-shirt! 

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What I would have told my newly-diagnosed self

After suffering for months (including losing 20 pounds, requiring blood transfusions, missing junior prom because I was in the hospital…) I was told I have ulcerative colitis, a disease with no cure, and that I would need medication for life. Hearing this traumatizing news, I knew my life would be changed forever. I thought I would never recover, and the sickness would continue. I did not know anyone else that had IBD, and I felt alone.

Looking back on my sickest times, I can see very clearly that the one thing I wished I had was someone else with IBD who I could talk to...someone I could relate to and who could understand what it’s like.

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Keep in touch...

The Parent Working Group (PWG) has 160 participating members, and we’re always encouraging them keep in touch with each other; to share ideas, experiences and knowledge, to support one another and to communicate openly about issues and opportunities at their local centers. Last year we challenged ourselves to create a resource that would ease the flow of information and inspire these kinds of connections.

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Becoming a Responsible Young Adult

I’m Fionna and I am 18 years old. I am a freshman in college, thinking about studying engineering, but haven’t decided yet...so that may change! I was diagnosed with ulcerative colitis when I was five and primary sclerosing cholangitis (liver complication) when I was seven.

Last year I started fencing at school. I love it! Sabre is my favorite.

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Getting What You Need, When It’s Needed

My brother has ulcerative colitis. For too long, I watched him suffer without access to the things he needed (education about the disease, a treatment that worked and that he was on board with, support and understanding). My brother, and everyone living with IBD, deserves to have access to all the tools, information, resources and support needed to not just survive with IBD – but to thrive.

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