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IBD Patient Family Advisory Board Accomplishments

  • Developed, designed and distributed educational materials and handouts for patients and families, including a letter to newly diagnosed patients.

  • Regularly review patient processes and clinic materials for patients and families; provide feedback and recommendations.

  • Members of the IBD PFAC attend each IBD clinical QI team meeting on a rotational basis, providing the parent/family voice and perspective.

  • Co-designed a Chronic Care App, along with the CM Philanthropy Department and internal CM team.

  • Co-designed a process for communicating Remicade Pre-Med Treatment Change, along with the IBD clinical team.

  • Participated in Engagement Campaign Work with Improve Care Now (ICN) to develop an IBD Flare Identification Tool.

  • Learned about Adverse Childhood Experiences (ACE) and its impact on IBD patients. Suggested an addition to school education materials to inform schools of the trauma associated with chronic disease diagnosis, treatment, and management.

  • Developed a resource list.

  • Provided edits and feedback for an updated diagnosis handbook.

  • Attend and present at the Improve Care Now Conference.