1. PATIENT AFFAIRS COMMITTEE Regional Presentation – Fall 2012

2. Ongoing Committee Initiatives  Patient Notification for Living Donor Candidates  Goal: Inform living donors candidates about the resources available through the UNOS Patient Services Line at 888/894-6361  Process: Include the OPTN Contractor Patient Information Letter as part of the Living Donor Consent Process

3.  Path forward for Patient Notification for Living Donor Candidates:  Review of the existing Patient Information Letter to determine appropriateness for use with Living Donors  Collaborate with the Living Donor Committee on incorporating the Patient Information Letter into the Living Donor Consent Process  Process already occurs at many larger transplant hospitals Ongoing Committee Initiatives

4.  Teen Adherence Project  Data shows a 25-30% graft loss among 11-34 year olds at 5 years post-transplant  Reflective of persons who are transplanted in their teens and early 20’s  Continue to experience graft loss into their 30’s  Significantly higher than other age groups at this point. New Initiatives

5.  Teen Adherence Project Goal: Develop an educational program that targets teens and young adults  Path Forward: Begin curriculum development in partnership with the Pediatric Committee and interested Pediatric Transplant Hospitals  The Program would be:  Developmentally appropriate  Contextually applicable and  Incorporate various educational modalities  Written materials, social media and Smartphone games  Include parents/family and staff New Initiatives

6.  Analysis of UNOS Patient Services Phone Line Data Base  More than 10 years’ of data from phone contacts is available  Analyze data to identify trends by organ with support from Dr. Amy Waterman, University of Washington- Saint Louis  Useful in the development of future educational resources for patients  Results will be shared with the transplant community New Initiatives

7.  What Every Patient Needs to Know  Now available in Spanish Additional Information

8.  Laura Ellsworth, Chair  Laura.Ellsworth@ppvotesNW.org Laura.Ellsworth@ppvotesNW.org  Kristie Lemmon, Vice Chair  Kristie.Lemmon@gmail.com Kristie.Lemmon@gmail.com  Freda Wilkins, Liaison  Freda.Wilkins@unos.org Freda.Wilkins@unos.org Questions?