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IBD Patient Family Advisory Board Accomplishments

  • 4 In-person meetings

  • Winter – we welcomed new members

  • Spring – An ideation meeting with our IBD kids and CM innovations director

  • Summer – Lunch with the clinical QI team

  • Fall – council meeting with a GI doctor

  • 2017 was focused on our partnership with philanthropy and subsequent development of a chronic care management app. The details aren’t fully available yet, but they are coming soon!

  • Two CM PFAC members attended the ICN community conferences in 2017

  • We have partnered with the clinical team to develop a process for communicating Remicade Pre-Med Treatment Change, development of a flu shot letter for patients and families, and creating a comprehensive resource list for families

  • Offered Feedback on Remicade Pre-Med Treatment Change

  • Developed a CMH Resource List – not distributed at this time

  • 4 In-person meetings (January, April, August, October)

  • The CMH GI Department began to work on increased consistency of care across the IBD population based on parent feedback!! A PFAC parent was invited to speak to the provider group at a meeting specifically about the parent experience and how consistent care is meaningful to families with chronically ill children.

  • Our PFAC has been in collaboration with a Peer-to-Peer Support Website called SmartPatients. Currently SmartPatients has provided our PFAC with a private group communication space. Additionally, we use SmartPatients as a safe and vital virtual support group to communicate with other IBD parents across the country.

  • Our IBD PFAC and the IBD clinical QI team met for a second Annual working lunch.

  • 2 PFAC members attended the ImproveCareNow (ICN) Community Conference in Chicago along with several members of the IBD clinical QI team. ICN is a large, International chronic care network focused on improving health, care and costs in pediatric IBD. Currently ICN is made up of 900 pediatric gastroenterologists at 95 care centers, caring for 27,200 children with IBD. CMH continues to be a strong voice in ICN, specifically in the areas of Provider/Parent collaboration and co-production and Transition and Transfer of Care from pediatrics to adult care.

  • IBD PFAC and Philanthropy Department found the opportunity to work together in coproducing an App for Chronic care engagement. Currently this project is in its infancy! But the future is looking exciting!!

  • Initiated the creation of new educational materials

  • Reviews all newly developed materials/handouts for patients and families

  • Promoted a redesign of the waiting room providing more easily accessible caregiver reading material

  • Worked with the team of the creation of an email listserv and newsletter

  • Reviewed new patient process and materials received and made recommendations

  • Attends national ImproveCareNow conferences

  • Promoted changes to the phone system for IBD families

  • Initiation of patient directed CMH videos

  • Provides accountability to the QI team to keep the focus on aspects of care that matter to families

  • Attends QI meetings with clinical team when needed

  • Developed a PFAC Vision/Mission

  • Identified a need for a more comprehensive discharge instructions following clinic visits and worked with the team to develop a form

  • Worked with marketing and production company to create a video for newly diagnosed IBD families

  • Our IBD PFAC and the IBD clinical QI team met for a First Annual working lunch. As a full group, we talked about the IBD program at CMH and our shared desire to continue to see the Program thrive.