Patient at Risk

Expanding Wisconsin?s web-based emergency information form program for children with special health care needs

Full Project Name:Patient at Risk: Wisconsin's EIF repository program for children with special health care needsPrimary Community Organization:Wisconsin Chapter of American Academy of Pediatrics FoundationPrimary Academic Partner:Kenneth Yen, MD, MS, PediatricsAward Amount:$199,936

Award Date

February2011

Project Duration:29 months

Project Description Narrative:

According to the National Survey of Children with Special Health Care Needs conducted in 2005-2006, 13.9% of U.S. children and 15.3% of Wisconsin children have special health care needs, translating to approximately 200,000 children under age 18 in Wisconsin alone who have specialized needs. These children access both scheduled medical and emergency medical services more often than their peers, presenting with more complex cases and are often more medically fragile, meaning that care providers across any health access point should need to be aware of their unique needs compared to the average child. For these children, having their personal medical information accessible wherever the child accesses primary and preventive health services can improve care and decrease delays, unnecessary tests, and unintentional injuries.

The goal of this project is to further develop Wisconsin?s web-based Emergency Information Form (EIF) Program for Children with Special Health Care Needs and to promote and train families, support organizations, and medical personnel in its use.

Community partners: American Family Children%apos;s Hospital, Baraboo District Ambulance Service, Children's Hospital of Wisconsin, General Federation of Women's Club-Oconomowoc Junior Woman's Club, Gundersen Lutheran Medical Center, Regional Centers for Children & Youth with Special Health Care Needs, St. Joseph's Children Hospital, St. Mary?s Hospital, St. Vincent's Hospital, Waukesha Fire Department, West Allis Fire Department, Wisconsin Emergency Medical Services for Children

Additional MCW academic partner: Sarah Slowik, PA, Pediatrics

Outcomes & Lessons Learned:

Developed, produced, and distributed patient enrollment kits and provider enrollment kits across Wisconsin, using feedback from families and professionals to modify the kit and develop outreach efforts
Undertook efforts to train a critical mass of families, community support organizations, public health leaders, and medical personnel to use the program, sharing with key or primary facility care coordinators, physicians, EMS providers, social workers and community organizations and joining partners in several health care systems throughout Wisconsin as well as the five Regional Centers for Children and Youth with Special Health Care Needs, families, EMS and other pre-hospital care providers
Identified key lessons for increasing use, including that a combination of parent and EMS buy-in within a community was key to success, as well as identifying that providing parents with a specific time and spot to enroll their child encoraged program use. Lessons were incorporated into pilot community dissemination and outreach efforts
Evaluated user feedback, documenting that 91% of users found the kit easy to use, with 81% of family respondents satisfied with the program and 88% of provider respondents agreeing the program is useful