Transcript Engaging Audiologists in EHDI Data Systems

Engaging Audiologists in
EHDI Data Systems
Les R. Schmeltz, Au.D.
NCHAM &
Arizona School of Health Sciences
Randi Winston, Au.D.
NCHAM &
The EAR Foundation of Arizona
Faculty Disclosure Information
• In the past 12 months, we have not had a significant
financial interest or other relationship with the
manufacturer(s) of the product(s) or provider(s) of the
service(s) that will be discussed in our presentation.
• This presentation will not include discussion of
pharmaceuticals or devices that have not been
approved by the FDA and will not discuss unapproved
or “off-label” uses of pharmaceuticals or devices.
Goals of EHDI
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All newborns will be screened for hearing loss before 1 month
of age.
All infants referred from screening will have diagnostic
evaluations before 3 months of age.
All infants identified with hearing loss will receive appropriate
medical, audiologic, and educational intervention services
before 6 months of age.
All infants with hearing loss will have a medical home.
Every state will have a complete EHDI Tracking and
Surveillance System to minimize loss to followup.
All families will receive culturally-competent family support.
Every state will do regular systematic monitoring and
evaluation to improve the effectiveness of the EHDI program.
All newborns will be screened for
hearing loss before 1 month of age.
• Vast majority of babies ARE screened prior to
discharge from newborn nursery
• Many programs offer out-patient screening for babies not
screened by discharge
• Most hospitals are reliable reporters of screening results
to EHDI program
• Nationally, over 90% of babies are screened
All infants referred from screening
will have diagnostic evaluations
before 3 months of age.
5.57% of babies screened needed audiological evaluations
(47 states)
55.09% of babies who needed diagnostic evaluations had
hearing status confirmed by 3 months of age (36 states—
range was from 5% in 3 states to 90% in 5 states)
Monitoring compliance with this goal requires the EHDI
program receive appropriate information from audiologists
All infants identified with hearing loss will
receive appropriate medical, audiologic, and
educational intervention services before 6
months of age
• Monitoring compliance with this goal requires the
EDHI program to receive appropriate data from the
medical home, audiologist and early intervention
providers.
All infants with hearing loss will have
a medical home.
• Monitoring compliance with this goal requires the
EHDI program receive appropriate data from the
medical community.
Every state will have a complete EHDI
Tracking and Surveillance System to minimize
loss to followup.
• Monitoring this goal is difficult because of the ambiguity
of “complete” and the definition of “lost to followup.”
• A Tracking and Surveillance System is incomplete if
data are not being received from professionals involved in
every step of the process
All families will receive culturallycompetent family support.
• Compliance with this goal requires the EHDI program
receive feedback from the families served.
Every state will do regular systematic
monitoring and evaluation to improve the
effectiveness of the EHDI program.
• This goal requires the EHDI program to have timely,
accurate data reporting from screening facilities,
audiologists, medical personnel, early intervention
providers and families.
Required to report to a state agency
when a child with permanent hearing
loss is identified:
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Physicians:
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No (25 states)
Audiologists:
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Yes (10 states)
Yes (25 states)
No (19 states)
Others:
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Yes (11 states)
No (27 states)
Comments:
“Audiologists encouraged, but not required, to report
to ISDH”
“Not required, but most audiologists report results
to EHDI on form sent to parents recommending the
assessment”
“Not required. When new Birth Information
Network is implemented, the language is supportive
of reporting ‘birth defects’ to the health department.”
Audiologists are not statutorily required to report to
Sound Beginnings, but many do.”
Roles of audiologist in EHDI
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Receives initial test data
Provides rescreen and diagnostic data
Provides amplification data and monitoring
Coordinates or initiates referral to early intervention
provider(s)
• Counsels parents regarding communication choices
• Sees that infant moves appropriately through the process
Without Audiological Data:
• EHDI programs cannot track individual babies who do
not pass the screening
• EHDI programs cannot identify babies with hearing loss
who may be in need of additional services
• EHDI programs cannot determine if babies at risk for
hearing loss do develop a loss
• EHDI programs cannot systematically monitor and
evaluate the effectiveness of the EHDI program
Why data may be missing:
• Lack of knowledge:
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Program may be tracking infant
EHDI program procedures
Importance of data to program
What data needs to be submitted
Whose job it is to submit the data
Timelines of EHDI program
Why data may be missing:
• Privacy concerns:
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HIPAA
Lack of legislative mandate
Parent does not release information
“Big brother”
Why data may be missing
• Lack of communication
– Audiologists may not be brought “on board” by the EHDI
programs
– Audiologists may not have a clear understanding regarding the
importance of their role in the “big picture”
– Mechanisms for reporting audiological outcomes to the EHDI
program may not be well established
Why data may be missing:
• Other reasons:
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May not have proper equipment to report
No reimbursement for reporting
Final diagnosis may be pending medical or other referral
May be waiting until all activity is complete (amplification,
early intervention)
Engaging AZ Audiologists:
• Audiologists are pulled into EHDI program as team
players and collaborators
– Community audiology meetings are held with other EHDI
stakeholders
• Educating audiologists on the importance of their role
relative to the EHDI process
• Audiologist’s barriers, issues and needs are discussed
• Collaborative problem solving often occurs
Engaging AZ Audiologists
• Collaboration with audiologists in developing state
guidelines for newborn hearing screening and pediatric
diagnosis
• Annual pediatric workshops are held to assist
audiologists in updating skills and to provide networking
opportunities
• Audiologists are invited to sit on various EHDI
taskforces
• Annual CDC data shared
Engaging AZ Audiologists
• Legislation passed in May 2005 requiring the reporting
of all data
– Developed Audiology reporting form
• Only included essential data elements
• Site visits made to introduce and implement form
Comments and Questions