ImproveCareNow innovation_fund


Top Five Stories About Life with Crohn’s

LOOP is a place for ICN Community members to share their stories – experiences, perspectives, wisdom. Since the blog was created in 2012, hundreds of stories have been shared by patients, parents, clinicians, researchers, collaborators and friends. We've recapped our top five, most read stories from patients about life with Crohn’s disease.


Innovation Update – IV Sweatshirt prototype is comfortable and efficient

Ella and I want to thank you all for your incredible response to our first blog post where we introduced the IV Sweatshirt Project! If you haven’t read our story yet, we encourage you to start there – in it we share about Ella’s diagnosis with Crohn’s disease, our journey to find a treatment that worked for her, and how her experience ultimately led us to create something together to help kids like her stay warm and comfortable while getting infusions.

After a few trials and some delays due to COVID-19, we are excited to share that we have received a solid prototype of our IV sweatshirt design and have been able to test it at our infusion center!


FAQ about the Shared Decision Making Toolkit for IBD Surgery

At April’s Live Online Community Conference (LOCC), Dayton Children’s introduced the Should I have IBD surgery? shared decision-making webtool and Dear Ostomy video. These resources are key components of an IBD Surgery Shared Decision-Making Toolkit that the Dayton team created using an ImproveCareNow (ICN) Innovation Fund award, made possible with support from the Clare Foundation. The toolkit generated a lot of excitement and questions, so project leaders, Dr. Kelly Sandberg and parent Shellie Doub took some time to answer to the most frequently asked questions.


Staying warm and comfortable during infusions

Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.

When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.


Two New Projects Funded in Year 3 of ImproveCareNow Patient and Parent Innovation Fund

We believe that many of the most innovative and potentially high-impact ideas for improving pediatric IBD care are likely to come from those living with the condition daily. Because of this, ImproveCareNow has continued to support innovative project ideas through the ImproveCareNow Patient and Parent Innovation Fund. The awardees for year three of this program have now been announced!


ImproveCareNow Announces Round Three of Innovation Fund to Support Patient and Parent Projects

We know that many of the most innovative and high impact ideas for improving pediatric IBD care are likely to come from those living with the condition on a daily basis—ImproveCareNow (ICN) parent and patient partners. Previously, there was not a formal mechanism to encourage and provide support for projects proposed by these partners. While many successful projects have been carried out by dedicated parent and patient members of the ICN community, many more are not able to be advanced without funding and assistance.

In 2017, we decided to address these needs and advance projects that will make a difference in the lives of our community members. With support from the David R. Clare and Margaret C. Clare Foundation, we launched the ImproveCareNow Patient and Parent Innovation Fund. In the first two years, the Innovation Fund has supported three projects, and we are excited to announce that funding will continue with Round Three of the ImproveCareNow Patient and Parent Innovation Fund in 2019. 


Stanford's IBD Cooking Night

My name is Mary and I’m head of the Stanford Children’s Hospital Parent Working Group. In 2017 my team and I received an ImproveCareNow Patient and Parent Innovation Fund award to host a fun and interactive cooking class to teach members of our center how to cook healthy meals for people with IBD. Through this project, we hoped to build self-management skills and help strengthen our center’s sense of community.


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.


Ostomy Project Funded Through ImproveCareNow Patient and Parent Innovation Fund

We believe that many of the most innovative and potentially high-impact ideas for improving pediatric IBD care are likely to come from those living with the condition daily. Because of this, ImproveCareNow has continued to support innovative project ideas through the ImproveCareNow Patient and Parent Innovation Fund. The awardee for the second year of this program has now been announced!


ImproveCareNow Announces Round Two of Innovation Fund to Support Patient and Parent Projects

We know that many of the most innovative and potentially high-impact ideas for improving IBD care are likely to come from those living with the condition daily. In 2017 we launched the ImproveCareNow Patient and Parent Innovation Fund and funded two exciting patient-and-parent-led projects.

One of the highlights of the Spring 2018 ImproveCareNow Community Conference was getting to hear updates on the activities carried out to date by both of these project teams. The parent-led teams from both MassGeneral Hospital for Children and Stanford Children's Health have hit the ground running and already have lessons and ideas for the rest of the community to steal shamelessly.

 


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