Data and Patient Information Management Systems for

1
Data and Patient Information Management Systems
for Early Hearing Detection and Intervention
Programs
2
(No Transcript)
3
EHDI Data and Patient Information Management
out
Then a
miracle
occurs
Start
Good work,
but I think we might
need just a little more
detail right here.
4
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

5
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)


6
Purposes of an EHDI Data System
Research
Program Improvement
and Quality Assurance
Screening
Diagnosis
Intervention
Medical, Audiological and
Educational
7
Nature and Use of Information is
Different For

• Hospitals
• State Departments of Health
• National Agencies

8
Types of Variables Included in
EHDI Data Management Systems
Collected continuously by
CORE VARIABLES
everyone.
Everyone agrees they would be
OPTIONAL VARIABLES
nice, but some may not have
resources to collect (may not be
collected continuously).
Some people think they are
RESEARCH VARIABLES
important others should be
aware that some are collecting
them.
9
Examples of Possible
CORE VARIABLES OPTIONAL VARIABLES
RESEARCH VARIABLES
Gestational Age
Infant's last name
)
)
Time of Birth
)
Specific Results of
Medical ID
)
)
Sex
)
Diagnostic Tests
Date of Birth
)
Nursery Type
)
Date and Time of Screening
)
Test
Mother's Maiden Name
)
Birthweight
)
Type of Delivery
Birth Hospital
)
)
Amplification
)
Mother's Occupational
Screening Hospital
)
)
Age at Amplification
)
Noise Exposure
Inpatient Screen Result
)
Days in NICU
)
Outpatient Screen Result
)
JCIH Risk Indicators
)
Diagnostic Result
)
Age at Diagnosis
)
10
Computerized Patient/Data Management
for Hospital-based UNHS Programs
Tracking/scheduling related to screening,
follow-up,
2
diagnosis, and intervention
Communication with stakeholders (e.g., parents,
2
physicians, audiologists)
Reporting to funding and administrative agencies
2
Program management and quality control
2
11
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)
12
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.

13
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.

14
Questions Most Appropriate For
National Data Base
Targeted Research
of births screened
Cost of screening per baby
2
2
Referral rate
Sensitivity/specificity of various
2
2
pass criteria
Prevalence per 1000
2
Are there negative side effects
2
Age at identification
associated with UNHS?
2
Delay between identification and
Risk factors associated with
2
2
amplification
hearing loss
15
Utah EHDI Data System
Hospital 1
Hospital 2
Hospital 3
State Department of Health
.
.
.
.
Hospital 21
16
(No Transcript)
17
Iowa EHDI System
Hospital 1
Hospital 2
.
Area Education
.
Agency 1
Hospital 9
Hospital 10
Hospital 11
Area Education
.
Agency 2
.
State Department of Health
Hospital 16
.
.
Hospital 17
.
Hospital 25
Hospital 26
Area Education
.
Agency 9
.
Hospital 35
18
Hawaii EHDI System
Hospital 1
Hospital 2
Zero-to-Three
State Department
Project
of Health
Hospital 3
.
.
.
.
Early Intervention
Hospital
Programs
19
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