Passport to Transplant: Managing Patient Experience and Engagement in their Evaluation Journey

1. Passport to Transplant:Managing Patient Experience and Engagement in their Evaluation Journey Rachel R. Cain MBA MHA Administrative Director UPMC Transplant Clinic & Outpatient Services

2. Background • Guardian Angel program • Successful patient experience initiative focused on the call-in process • Concept = target another phase of transplant patient experience • Evaluation for transplant  complicated process at time of upmost vulnerability of patients and their families

3. Method • Patient and Family Centered Care (PFCC) model • Shadowing of evaluation process for multiple organ types • Kidney • Liver • Heart • Lung • Small Bowel

4. Results from Shadowing • Multiple touch points with numerous providers • Patients didn’t know who was their social worker v. nutritionist v. nurse coordinator • Information overload • Lots of paperwork, business cards and other materials to review and keep organized • Occasionally patients sent home before all components of evaluation completed • Variety of diagnostic testing • Hard to differentiate what was needed v. completed v. scheduled for future • Not sure what to expect after evaluation week is completed • Inconsistency across organs • Patient materials in need of updating

5. Guiding Principles and Tactics • Guiding Principles • Patient expectations of the evaluation process • Patient knowledge of multi-disciplinary care team members • Patient understanding of next steps upon completion of evaluation • Innovation = simplicity • Tactics • Dedicated section for each service (nutrition, hepatology, etc.) with spot for “business card label” – name and contact information • Sections to track progress through diagnostic services and other consults • “Wrap up” page to identify next steps – completed by nurse during “wrap up” appointment (last appointment of the evaluation week) • Polished and professional patient materials

6. Front Cover

7. Organizing Names and Roles

8. “Wrap Up” Page

9. Results • 100% thought that it was easy to read and understand. • 100% felt they knew what was going to happen to them. • 72% thought that the information helped them to prepare for their experience. • “Liked the stickers.” • “It was helpful and I completed everything in the booklet.” • “It was well-organized, very helpful, and step-by-step.” • “I had a lot of questions because of educational reading (beforehand). I looked at the passport and thought: 'there are the answers!'.” • “I had a kidney transplant done at another hospital ten years ago, and I was given nothing. This passport is an amazing concept. It’s a great one. I just think that this is an amazing tool for patients.”

10. Continued Progress and Next Steps • Pilot with Liver Transplant evaluation patients completed • Passport to Transplant has been spread to • Kidney • Heart • Lung • First Passport to Post Transplant care developed for Kidney transplant recipients • Focus on medication compliance, routine labs, etc. • Next steps • Complete roll out of evaluation Passports to remaining patient types (Pancreas, Small Bowel and Donors) • Beginning to build concept of Wait List Passport

11. Hindsight • Continued revamp of materials with patient feedback • A patient focus group at the onset may have helped provide focus and avoid mistakes in first drafts • Recognition that each organ type is different – standardization doesn’t always add value • The most simple things can have the largest impact