How P.I.C.K. was Formed

PICK was developed in late 2000, by a group of mothers of children with severe cerebral palsy resulting from kernicterus, a condition caused by excessive bilirubin levels in newborns. Media coverage in September 2001, following the testimony of Susan Sheridan (PICK co-founder) at an Agency for Healthcare Quality & Research summit on patient safety, facilitated the networking of seven PICK moms. They quickly realized that their children's injuries were not as rare as the medical and public health communities estimated. PICK mobilized rapidly to create awareness about kernicterus and strategies for preventing this easily preventable patient injury.

Progress and Partnership

       2000

• October 2000, moms of children with kernicterus meet at a conference in Chicago, IL.

       2001

• Organized the first system-wide consumer/healthcare workshop “Strategies for a System-wide Change in the Management of Neonatal Hyperbilirubinemia to Prevent Kernicterus” that took place in February 2001. Participants included the 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, Office of the Assistant Secretary for Planning and Evaluation, and nationally renowned researchers in the area of jaundice management and kernicterus.
• Advocated and worked constructively with JCAHO to issue a May 2001 Sentinel Event Alert on kernicterus prevention, the first purely consumer driven alert issued by JCAHO.
• Advocated and worked collaboratively with JCAHO to issue a May 2001 Sentinel Event Alert on kernicterus prevention, the first purely consumer driven alert issued by JCAHO.
• Collaborated with the CDC and provided data for the June 2001 report on kernicterus in the Morbidity/Mortality Weekly Report. CDC also presented information at a Congressional briefing on kernicterus in July of 2001.
• Advocated successfully for the classification of kernicterus as a “Never Event” by the National Quality Forum
• Engaged components of the healthcare system involved in determining the national standard of care for bilirubin screening in neonates – including the AAP, CDC, Health Care Financing Administration (HCFA), Medicaid, Agency for Healthcare Research and Quality (AHRQ), Health Resources Services Administration (HRSA), NIH and the media – in an effort to alert and educate organizations, healthcare professionals and families of the dangers of hyperbilirubinemia and to implement strategies for the eradication of kernicterus.
• Honored at the national Patient Safety Partnership Symposium as a success story of partnership between consumer and the- healthcare system to initiate systemwide improvemtns.
• Initiated a parent-driven research study on cases of kernicterus, including the factors that resulted in severe hyperbilirubinemia and the clinical signs of kernicterus.

       2002

• Held a family conference in June 2002 in collaboration with Children’s Hospital in Richmond, VA and Virginia Commonwealth University Medical College of Virginia with 150 attendees including scientists, medical experts, and 25 families with children with kernicterus.
• Received grant funding from the CDC/NCBDDD in collaboration with the University of Pennsylvania for public education, prevention and surveillance of severe hyperbilirubinemia.

       2003

• January 2003, PICK educational video was filmed in Boston.
• Testified before the Food and Drug Administration on the importance of the drug Stannsoporfin for the prevention of severe hyperbilirubinemia and kernicterus.
• State of Minnesota begins tracking “Never Events” including hyperbilrubinemiea

       2004

• Coordinated the formation of the Kernicterus Prevention Partnership Campaign (KPPC). Goals, objectives and members are described later in this report.
• Received funding from the Health Resources Services Administration, Maternal and Child Health Bureau for the KPPC.
• PICK co-founder Susan Sheridan invited to speak at the World Health Organization in Geneva during which the PICK education/prevention video was shown.
• Established partnership with the Civitan International Research Center where research on bilirubin toxicity is underway.
• Release of revised jaundice management guidelines by the American Academy of Pediatrics.
• CDC issues announcement in MMWR on the updated jaundice management guidelines.

       2005

• Future projects will include a conference in October of 2005 that will bring together prominent researchers to create a plan for promising treatment and research for children and adults with kernicterus and greater understanding of the pathophysiology of the disorder.

In addition to prevention at a national level, PICK members have worked tirelessly in their local communities and states to prevent kernicterus by speaking at churches and hospitals in their home towns to raise awareness of the dangers of newborn jaundice. Executive board members have spoken and provided information booths at numerous national and regional conferences and conventions on prevention of kernicterus and patient safety.