Data and Patient Information Management Systems for Early Hearing Detection and Intervention Programs.
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Data and Patient Information Management Systems forEarly Hearing Detection
and Intervention Programs
Good work,but I think we mightneed just a little moredetail right here.
EHDI Data and Patient Information Management
Then amiracleoccurs
out
Start
Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs
Sample Prevalence % of Refers
Site Size Per 1000 with Diagnosis
Rhode Island (3/93 - 6/94) 16,395 1.71 42%
Colorado (1/92 - 12/96) 41,976 2.56 48%
New York (1/96 - 12/96) 27,938 1.65 67%
Utah (7/93 - 12/94) 4,012 2.99 73%
Hawaii (1/96 - 12/96) 9,605 4.15 98%
Tracking "Refers" is a Major Challenge(continued)
Initial Rescreen Births Screened Refer Rescreen Refer
Rhode Island 53,121 52,659 5,397 4,575 677 (1/93 - 12/96) (99%) (10%) (85%) (1.3%)
Hawaii 10,584 9,605 1,204 991 121(1/96 - 12/96) (91%) (12%) (82%) (1.3%)
New York 28,951 27,938 1,953 1,040 245 (1/96-12/96) (96.5%) (7%) (53%) (0.8%)
Purposes of an EHDI Data System
Screening
Research
Diagnosis InterventionMedical, Audiological and
Educational
Program Improvement and Quality Assurance
Nature and Use of Information is Different For:
Hospitals
State Departments of Health
National Agencies
Types of Variables Included in EHDI Data Management Systems
CORE VARIABLES:
OPTIONAL VARIABLES:
RESEARCH VARIABLES:
Collected continuously by everyone.
Everyone agrees they would be nice, but some may not have resources to collect (may not be collected continuously).
Some people think they are important; others should be aware that some are collecting them.
CORE VARIABLES OPTIONAL VARIABLES RESEARCH VARIABLES
Infant's last name
Medical ID#
Date of Birth
Mother's Maiden Name
Birth Hospital
Screening Hospital
Inpatient Screen Result
Outpatient Screen Result
Diagnostic Result
Age at Diagnosis
Time of Birth
Sex
Nursery Type
Birthweight
Amplification
Age at Amplification
Gestational Age
Specific Results of Diagnostic Tests
Date and Time of Screening Test
Type of Delivery
Mother's Occupational Noise Exposure
Days in NICU
JCIH Risk Indicators
Examples of Possible:
Computerized Patient/Data Management for Hospital-based UNHS Programs
Tracking/scheduling related to screening, follow-up, diagnosis, and intervention
Communication with stakeholders (e.g., parents, physicians, audiologists)
Reporting to funding and administrative agencies
Program management and quality control
Statewide EHDI Data System
Monitoring program status to identify in-service and technical support needs.
Safety net for babies who "fall through the cracks"
Assisting with follow-up / enrollment for diagnostic and intervention programs
Access to data for public health policy and administrative decisions.
Linking to other Public Health Information databases (e.g., Immunization, WIC, Vital Statistics, Early Intervention, Birth Defects)
Examples of Benefits from Linking EHDI Database with Other Public Health Information Systems
An infant referred from the hospital-based UNHS program, but lost to follow-up, could be identified and provided with EHDI services when he or she comes in for the DPT Immunization at eight weeks of age.
By linking the Birth Defects Registry and EHDI data, children with birth defects that make them substantially more likely to develop late onset losses could be monitored and provided with assistance at a much earlier time.
Many of the children who become “lost” for immunizations or birth defects tracking are the same children who are lost for EHDI. By sharing information, fewer resources are needed to more successfully find and provide services to “lost” children.
Linking the EHDI and vital statistics allows a population-based system to be created so that every live birth in the state is included in the EHDI system.
Linking EHDI to vital statistics substantially expands the types of epidemiological studies that can be done.
Hospitals Most Likely to Participate in a State EHDI Database If:
it provides locally useful data.
gathering data is quick
transfer to the state is trouble-free.
it reduces other reporting requirements.
Questions Most Appropriate For:
% of births screened
Referral rate
Prevalence per 1000
Age at identification
Delay between identification and amplification
Cost of screening per baby
Sensitivity/specificity of various pass criteria
Are there negative side effects associated with UNHS?
Risk factors associated with hearing loss
National Data Base Targeted Research
Utah EHDI Data System
State Department of Health
Hospital 1
Hospital 2
Hospital 3 . . . .Hospital 21
Individuals and Families
Corporate Providers
HMOs
ACTION 2000
Advisory Committee
Families, Agencies, & Communities Together
(FACT)
Utah Health Policy
Commission
Individual Group Providers
Utah Health Information
Network (UHIN)
Early Intervention
Utah State Legislative
Health Data Committee
Utah Department of Health
LHD #1
LHD #3
LHD #4
LHD #5
LHD #6
LHD #7
LHD #8
LHD #9
LHD #10
LHD #11
LHD #12
LHD #2
Vital S
tatistics Electronic Birth Certificate
USIIS EHDI
WIC BDR
HealthInsightProject Bridge
Newborn Screening (metabolic)
Medicaid
Iowa EHDI System
State Department of Health
Hospital 1Hospital 2 . .Hospital 9
Hospital 10Hospital 11 . .Hospital 16
Hospital 17
Hospital 25Hospital 26 . .Hospital 35
Area Education Agency #1
Area Education Agency #2
Area Education Agency #9
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.
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Hawaii EHDI System
Hospital 1
Hospital 2
Hospital 3 . . . .Hospital
State Department of Health
Zero-to-Three Project
Early Intervention Programs
Options for Developing an EHDI Patient/Data Management System
• Develop your own
• Modify an existing system (e.g. “heelstick” data management system)
• Integrate with Electronic Birth Certificate
• Purchase an existing system
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