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.

Studies suggest that a support group of some kind is an essential element for a Pediatric Inflammatory Bowel Disease (IBD) center, but our experience also suggests that many ICN care centers do not have such a program. We believe that involving all stakeholders in the process of quality improvement will result in improved IBD care and outcomes. Our manual addresses a number of challenges associated with establishing a trusting partnership and creating a network community. It includes a section on the readiness of a center to partner, a year-long programming guide, how to navigate HIPAA challenges and much more. We have built upon the work that has already been done by others in the ICN network and added our experience.

The partnership between our IBD care team and parents/patients began on January 31, 2016. The core IBD Physician team at the MGHfC IBD Center invited parents they thought would be interested in partnering with them to improve care for pediatric IBD patients and families to join them at a working meeting. Parents who attended were divided into focus groups with one directive: If money was not a consideration, what ideas do you have to improve care? Out of these meetings grew the PPAT we have today, and two parents and one patient emerged as primary champions to further partner with the IBD team.

It’s a leap of faith for a team of medical care providers to begin a partnership with parents and patients. There is a vulnerability that comes with allowing such close inspection of the inner workings of a clinic and the care that is provided. Trust must be established, honest and candid feedback must flow freely, and a commitment on the part of all stakeholders is necessary to achieve a true partnership and success.

It takes time to establish this kind of working relationship and the progress isn’t always linear. Life happens and there are times when other priorities must take precedence. Physicians have demands on their time; parents are caring for their children, as well as managing other family, work and outside demands. Patients need to attend to school, work, and focus on caring for themselves. Sometimes you can give a lot and other times you can only give a little. That’s the beauty of a cooperative team - there is always someone there to help mitigate the time challenges of other teammates and keep the forward momentum.

Mutual respect and understanding, developed between all members of our team, has allowed us to be successful in growing our engagement community from 18 members to over 100. Together we have provided numerous educational programs that have increased patient and family knowledge of IBD and perhaps most importantly, provided patients and families an opportunity to network with others facing similar challenges. In doing so, friendships have been forged and support for one another has grown organically. The past year has been an amazing year of growth and learning. We look forward to continuing our journey of building our engagement community and working together to improve the care of children and families with IBD!


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Learn more about the MGHfC “How To Manual” for engagement by joining the ICN Spring Virtual Community Conference

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