Several teams have been meeting regularly as a part of the ImproveCareNow (ICN) Engagement Campaign, to learn about and test tools and ideas to increase parent and patient engagement at their centers. These were all teams that were struggling to find parent partners who wanted to be involved just one year ago. During their most recent check-in call, the group ended up having a vibrant discussion where they shared successes, big and small, and learned from each other how to continue to increase engagement.


As discussed in a previous “Notes from the Field”, ICN centers are continuing to build on the “snowflake model” to re-frame the way their ICN teams share the work of improving care & health for kids with IBD. Using this model, they are able to improve communication between their center and parents while spreading the work across the team in an efficient and effective way. In addition to applying the snowflake model, all of these teams have developed and delivered a “hard ask”, such as: please attend one of our QI meetings, to really make things happen in a specific and meaningful way.


Image: MassGeneral Hospital for Children Family Education Day

The team at MassGeneral Hospital for Children recently held their own parent engagement event.  With their parent group beginning to grow, they implemented the snowflake model to help organize the group and keep the momentum going. The larger parent group was broken down into 4 groups of parents focused on specific areas: mentoring, engagement, clinic experience, and family educational materials. The team is now facing the challenge of continuing to encourage the group interaction, while also allowing them to work independently. They are working to continue supporting the groups with help from center staff and monthly check-ins to keep the parent group and center goals aligned, while at the same time allowing the groups to choose what projects they want to work on.

Boston.pngSometimes parent engagement starts with a smaller step, like at Boston Children’s Hospital. With little parent involvement on their team in the past, Boston recently asked a potential parent partner to join their team’s monthly Quality Improvement meeting. The meeting served as an introduction between the parent and the Boston team where they shared ideas and opportunities, including educational materials and the possibility of creating a peer mentoring program. Out of this meeting, the team was able to set up a mock education visit during which their new parent partner gave feedback and suggested ways to improve the experience for future parents and families.

Greenville.pngThe parent group at Greenville Children’s Hospital is also building momentum. To help their parent group collaborate more easily and move forward more quickly with projects, the parent leads decided to test meeting virtually. Time saved by telecommuting allowed the parents to finish creating their new patient handbook. With the help of a team intern, the parent group was able to steal shamelessly from similar tools on the ICN Exchange to develop their handbook. The handbook is currently being reviewed and the parent group will focus next on developing tools and materials for transition from pediatric to adult IBD care. That’s not all; some parents in the group have been writing letters for parents of newly diagnosed patients who are just beginning their IBD journey. These letters are a simple way to connect, offer support, introduce the parent group, and share contact information. The group plans to develop a FAQ document with questions from parents of newly diagnosed children to include with the introductory letter.

Although UT Southwestern/Children’s Health is still in the very early stages of getting parents involved at their center, they are testing small changes to identify interested parents. One test they are planning to try is asking parents for input on the IBD Education book their team has put together. They are hoping to open the door for more ongoing communication with parents and show how they can incorporate parent feedback into the projects they are working on as a team.


Children’s Healthcare of Atlanta is in the process of planning their next family education day. They know from past experience that these events are a good way to get parents interested and involved locally. Rather than just inviting parents to attend the event this time, they are asking parents to help plan the event. With parents actively involved in planning the event, they are hoping to improve the experience for patients and family, and to offer activities focused on parent engagement and community building.

This group of ICN Teams is collaborating closely to improve their ability to engage parents in improving care and health for kids at each of their centers. They are all teaching and all learning as they share examples of what works, and ideas of things to try on their monthly check in calls. But they are not the only teams who can benefit from the work being done here. The reason we are sharing these stories is because we want other ICN teams to take these learnings and adapt them for their own use; to enhance engagement at their center. And we hope that patients and parents who have not yet partnered with their team will feel inspired to strike up a conversation at their next visit and ask how they can help.

By continuing to build parent and patient engagement into the culture and the fabric of IBD clinics at all ICN centers we will improve care and health in ways that have the potential for maximum impact and will lead to the best outcomes for our kids, and for all kids with IBD.


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