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Organization:
University of Minnesota School of Medicine, Dept. of Pediatrics
Address:
Box 94 MMC, 420 Delaware St. Minneapolis, MN 55455
Project Director: Lee A. Pyles, MD
612-626-2755
pyles001@umn.edu
Contact Person: Lee A. Pyles, MD
PROBLEM:
Emergency and Disaster Preparedness for Children with Special Health Care Needs (CSHCN)
requires availability of detailed, child-specific information in an organized plan. CSHCN often face unique medical
emergencies, which can exceed the expertise of their parents, primary care (PCP) or emergency care providers.
Minnesota's previously funded EMSC Targeted Issue Grant, "Emergency Preparedness for Infants with Significant Heart Disease",
demonstrated that modern information management technology can be deployed to make ACEP/AAP Emergency Information Forms (EIF)
available via the internet in a secure, private fashion. The goal of that study was to establish an emergency planning process for
cardiac CSHCN. Now in year 3, the study has enrolled 60 infants with cardiac disease in the HIPAA-compliant system known as
Minnesota Emergency Medical Services for Children Information System (MEMSCIS, www.emscr.org or www.emscr.com )
and is tracking 55 control infants with cardiac disease. This new proposal represents the next logical step to test the robustness and utility of
MEMSCIS by enrolling large numbers of CSHCN within an extended geographic area.
The emergency problem for CSHCN is the information-poor environment. Parents, PCP's, and protected health information (PHI) may all be incomplete sources of
information. PHI in paper charts is chronically unavailable, outdated and incomplete and electronic PHI is usually not organized with an emergency orientation.
GOALS AND OBJECTIVES:
The goal of the proposed project is to improve emergency and disaster preparedness for children with special healthcare needs
(CSCHN). It is hoped that this will contribute significantly to improved health in these children. The goal will include optimization of emergency preparedness
for individual children cared for in the Twin Cities and in the Upper Midwest. Practically, the project will improve transitions of CSCHN and families between
tertiary hospitals, home, school, and the medical home in the event of an emergency, using MEMSCIS. In addition, the project will promote widespread use of the
ACEP-AAP EIF for children with a variety of health care needs and diversify the applicability of MEMSCIS as a model for a nationwide registry of EIF summaries
and supporting data.
Specific Objectives include:
- Educate families, PCP's, pediatric subspecialists, staff nurses, and
discharge coordinators at pediatric hospitals the importance of establishing an emergency medical plan and EIF and identify
barriers to maintaining emergency preparedness for CSHCN in the community.
- Engage stakeholders in discharge planning from the onset of hospitalization in order to improve transitions and to enroll
most hospitalized children in MEMSCIS. Develop and disseminate an electronic hospital discharge tool that not only
populates an encounter in MEMSCIS but also populates a brief hospital discharge summary and discharge orders/prescriptions
from a combination of electronic data interchange and hands-on data entry by stakeholders.
- Conduct a mass enrollment of CSHCN leaving pediatric hospitals and develop a dialogue with the hospitals to facilitate
electronic data interchange (EDI) with MEMSCIS. Link existing conventional CSHCN data management systems in MN (PERK, U-Kids
and Childrens Medical Organizer with MEMSCIS. 4) Continue to completion the 2001 Cardiac EIF project by the end of grant year 1.
Continuation is expected to allow enrollment of a total of 300 children in the study that is designed to determine effectiveness
of MEMSCIS in decreasing emergency resource utilization in the population of infant cardiac patients.
METHODOLOGY:
Building on the previous "Cardiac EIF"project, the investigators will enhance the
MEMSCIS System to expand usability and decrease time requirements for data input.
- Objective 1 will be accomplished by MN EMSC Resource Center in concert with the PACER group of Minneapolis, MN to provide
education to parents regarding resources and the need for emergency planning for their special needs child and to
hospital staff regarding working with CSCHN families. PACER and hospital staffs will raise awareness of disaster preparedness
and HIPAA privacy compliance.
- Objective 2 will be addressed by originating an MEMSCIS EIF file within 48 hours of hospitalization of a participating special
needs child. Families will sign an approved IRB consent to participate. ImageTrend, Inc. of Lakeville MN, the software
developers of the MEMSCIS system will again participate. A discharge "wizard" program will be developed to lead a clinical nurse,
discharge planner or parent through the enrollment process, minimizing the need for physician participation, which has previously been
a major barrier to nationwide adoption of the EIF. Electronic data interchange of demographics will be used to start the discharge
form.
- Objective 3 The discharge encounter will be developed by stakeholders and information experts and then programmed by
ImageTrend in year 1. A set of XML standards for the EIF have been previously established by ImageTrend.
The paper-based clinical information systems will be transitioned to MEMSCIS by MN EMSC Resource Center during year 1.
- Objective 4 will be accomplished by continuing the cardiac study for 6 months with no-cost extension funds from year 3 of
the 2001 cardiac EIF project and then by funding the three current part-time study nurses for the second half of year 1 of the
new study.
EVALUATION:
- Objective 1: Education will be measured by numbers of families contacted, trained,
consented to participate, enrolled and surveyed for satisfaction, barriers and feasibility of solutions. Objective 2 will be
measured as satisfaction of stakeholders with transition to home. The discharge encounter tool will be evaluated by noting the
percentage of EIF's that are fully completed as a result of completion of the hospital's discharge planning instrument.
- Objective 2 will be evaluated by measuring the time required to input the patient data, the number of parents who opt for
inclusion in the web-based system, and parental satisfaction with the system, measured at readmission.
Numbers of readmissions will be measured to track the utility of the system. Diagnosis and procedure lists will be
evaluated by tracking pick list vs. write-in diagnoses over two years of use. The "write-in" list will be further analyzed
to refine diagnosis options.
- Objective 3 will be evaluated by surveying prevalence of emergency plans/EIF's at discharge and
at ED presentation. Beginning in year 3, MEMSCIS participation will be tracked at the time of hospital or emergency department
admission to achieve 10% MEMSCIS participation by CSHCN presenting to ED in the last 6 months of year 3 of the study. ED visits
will be tracked to find a decrement in return visits by MEMSCIS-enrolled CSHCN.
- Objective 4 will be evaluated by measuring success in enrolling 300 Cardiac EIF subjects and tracking for at least one year.
Data analysis will be performed via a no-cost extension of the 2001 study. Hospital emergency resource will be measured.
Parents are being surveyed yearly for satisfaction and experiences with the system.
KEYWORDS:
Children with Special Health Care Needs, Emergency Preparedness, Family Centered Care,
Health Information Management, Electronic Data Interchange, Medical Home.
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