ImproveCareNow Patients_&_families


Join Us - Spring 2019 Virtual Community Conference

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 May 2 between 6 and 8pm eastern for our Spring 2019 Virtual Community Conference. Read more to see the agenda for this event.


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!


All in for ICN

Last year I joined the board of ImproveCareNow (“ICN”). ICN is a collaborative health care network dedicated to improving the care and outcomes for children with Crohn’s disease and ulcerative colitis (also called Inflammatory Bowel Disease or IBD). What excites me about ICN is that it has developed a transformative model for the delivery of health care unlike anything I have ever read about or experienced myself.


ImproveCareNow Launches NEW Community Engagement Learning Series

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.


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.

 


ImproveCareNow Launches Campaign to Support Parent and Patient Participation at Community Conferences

ImproveCareNow has announced that it is seeking the support of its incredibly committed community, to raise funds that will support the continued inclusion of patients and parents at Community Conferences. Donations to this fund will be matched dollar-for-dollar up to $25,000 and will cover travel and registration costs for parents and patients to attend the Fall 2018 Community Conference in Chicago.


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


ImproveCareNow Announces Innovation Fund to Support Patient and Parent Projects

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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.


To Scarlet

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This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.


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