Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA
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Parents of Infants and Children with Kernicterus presentation at 2012 Medicine X as part of Patient Centered Outcomes Research Institute (PCORI) panel presentation on the power of partnership.(PICK)
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Parents of Infants and Children with Kernicterus Power of Partnership presentation at 2012 Medicine X, Stanford University, Palo Alto, CA
- 1. POWER OF PARTNERSHIP WORKING TOGETHER TO PREVENT AND TREAT KERNICTERUS
- 2. A $1 BILIRUBIN TEST COULD HAVE PREVENTED BRAIN DAMAGE • Justin has severe cerebral palsy • Unable to sit on his own, feed himself or get a drink • Has auditory neuropathy, visual tracking difficulties, strabismus, enamel hypoplasia • Not able to speak intelligibly
- 3. PICK BEGINNINGS • 6 moms meet in Fall 2000 • Recruited well- known, nationally recognized researchers and safety experts to be PICK advisors
- 4. SYSTEM-WIDE CONSUMER HEALTHCARE WORKSHOP • February 2001 Participants • Joint Commission on Accreditation of Healthcare Organizations (JCAHO) • Centers for Disease Control and Prevention • National Center on Birth Defects and Developmental Disabilities (CDC/NCBDDD) • National Institutes of Health (NIH) • American Academy of Pediatrics (AAP) • Boston Children’s Hospital, Harvard School of Public Health • Maternal Child Health Bureau • National recognized researchers
- 5. OUTCOMES
- 6. PICK PARTNERSHIPS IN ACTION MATERNAL AND CHILD HEALTH BUREAU HOSPITAL CORPORATION OF AMERICA
- 7. PARTNERSHIP IN ACTION INTERNATIONAL OUTREACH
- 9. PREVENT THIS
- 10. COMMUNICATIONS MEDIA
- 11. COMMUNICATIONS WEBSITE AND SOCIAL MEDIA
- 12. WHAT WAS ACCOMPLISHED? • Model for a family-centered, systems- based approach for constructive parent and healthcare partnerships to address preventable newborn disabilities • Non-profit organization governed primarily by patients or family members • Created expert advisory panel with same passion and courage • Identify and contact partners or partner organizations • Have changed the landscape for how newborn jaundice is treated
- 13. AND MORE TO COME • Connecting families from around the world • Planning 2013 Family Gathering and 2014 Family and Research Conference • Focus on Family Support and Research for effective treatments for individuals with KI
- 14. THINK OF ALL THE POSSIBILITIES WHEN WE ALL WORK TOGETHER! JUSTIN SMITH
- 15. THANK YOU Kris Schulze Parents of Infants and Children with Kernicterus (PICK) Kris.schulze@pickonline.org www.pickonline.org