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.

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 Community Engagement Learning Series (CELS) trainings were designed by patients, parents, clinicians, and ImproveCareNow staff to share best practices and new skills. Whether you are just getting started or have an established team, you will get something out of these trainings. Each session presents new skills, and provides a chance to work with others to plan how to implement what you learned at your center. Each CELS training is designed to empower you to connect more patients and parents to your team, to build relationships, develop leaders, and share information that improves lives.

ImproveCareNow Engagement Campaign Director, Chris Keck, has announced that four Community Engagement Learning Series (CELS) trainings will be offered in summer 2018. CELS trainings - designed collaboratively by patients, parents, clinicians and ImproveCareNow staff members - are intended for interested ICN community members and teams as a way to share best practices and introduce new skills in an active learning environment. Summer 2018 sessions will focus on volunteer recruitment, team and relationship building, leadership development and using personal storytelling to explain and make change in health care.

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.

When you give passionate people the opportunity to contribute you will be always be astounded by what can be achieved. #communityled #communityproud #icncc18s pic.twitter.com/oZg4q2s9ZP

— George Dellal (@georgedellal) April 27, 2018

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 launched the ImproveCareNow Patient and Parent Innovation Fund. The awardees for the pilot year of this program have now been announced!

We know 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 is pleased and proud to announce the launch and pilot year of the ImproveCareNow Patient and Parent Innovation Fund.

Studies of transition readiness in young adults with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their disease. This can lead to worsening disease activity and increased healthcare utilization.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Within ImproveCareNow, the Transition Task Force is focusing on transition and transfer of care across the network.

Dr. Colletti and I had the great honor of being invited to travel to Claremont, California to receive the Drucker Prize on behalf of every person working to support the mission of ImproveCareNow. The ceremony was a small gathering in Peter Drucker’s modest home, which now serves as an archive of his work. I wanted to share my comments from the event.

What is ImproveCareNow? ImproveCareNow is a Learning Health Network. OK, great. But what does that mean and why is it important?