Tennessee Child Health Profile (TN-CHP)

Report
CHILD HEALTH PROFILE FOR CHILDREN
WITH SPECIAL HEALTH CARE NEEDS
AAP Annual Meeting
Council on Clinical Information
Technology-October 28,2007
Carmen B. Lozzio, MD, FACMG
Brent Shelton, PhD
Rosalyn Lemak MPH,
Billy R Hancock,
Robert Eubanks, MS and
Michelle Liao, MS
University of Tennessee-Graduate School of Medicine,
Knoxville, TN
Disclosures for
Carmen B. Lozzio, MD, FACMG
A.“I have no relevant financial
relationships with the
manufacturers (s) of any
commercial products (s) and/or
provider of commercial services
discussed in this CME activity.”
B.I do not intend to discuss an
unapproved/investigative use of
a commercial product/device in
my presentation
GOALS OF THE PROJECT



Improve quality of health care for CSHCN
by summarizing all relevant information
in an electronic health record called TN
Child Health Profile (TN-CHP)
Expand HIT by linking public health
databases with genetic, developmental
and educational data on each child
Make available to providers and
parents/legal guardians a secure, web
based TN-CHP
The Tennessee Child Health
Profile (TN-CHP) is a webbased e-health record that
condenses the highlights of
each child’s medical diagnosis,
special needs, and recent
services and evaluations into a
concise, easy-to-read
summary, so that authorized
providers can quickly
determine appropriate next
steps. In addition, parents who
opt to have their children
included in the system will be
able to view their children’s
profiles online.
TN-CHP GOALS:



Improve health care delivery,
coordination of services, continuity
of care and timeliness of follow-up
Provide comprehensive medical,
developmental and case
management data from a single
secure website
Allow long term tracking and avoid
“lost” cases
Participating Institutions

UT Graduate School of Medicine-Knoxville,
Department of Medical Genetics

Memorial Hospital/UHS, Department of
Information Service, Knoxville

Vanderbilt University Department of
Pediatrics -Genetic Center, Center for Child
Development

UT Health Sciences Center (Memphis)
Boling Center for Developmental
Disabilities and Genetic Center
Additional Collaborations

Tennessee Department of Health

Vanderbilt e-Health Initiative

HRSA- Regional Grant: SERGG


Connections Community of PracticePublic Health Informatics Institute
AHRQ-Resource Center
TN-CHP Pilot Phase
in East TN
Secure
Web
Newborn Screening
Link
Hearing Screening
VPN
Local health
departments
Secure
Web
Link
Acute
Care
Hospitals
TN-CHP
Birth Certificate
UT Genetic Center
Pediatric
Endocrinologists
Other
Databases
Parent
Control
Secure
Web
Pediatricians and
Other Providers
Statewide implementation of
Tennessee Child Health Profile
(TN-CHP)
Secure
Web
Newborn Screening
Link
Hearing Screening
VPN
Local health
departments
Secure
Web
Link
Acute
Care
Hospitals
TN-CHP
Birth Certificate
Genetics and
Sickle Cell Centers
Pediatric
Endocrinologists
Other
Databases
Parent
Control
Secure
Web
Pediatricians and
Other Providers
TN-CHP AHRQ Grant for Children
with Special Healthcare Needs
Acute Care
Hospital
Disorders Detected by
Newborn Screening
(NBS)
TN-CHP
TN-CHILD
HEALTH
PROFILE
Hearing Loss
Confirmed after NHS
Genetic Disorders
Detected by Genetic
Centers
Developmental
Disabilities Diagnosed
by Child Development
Centers
Genetic
Centers
Secure
Web
Volunteerr
e-Health
Initiative
Other
Databases
Parent
Control
Child
Development
Centers
Pediatricians
Local Health
Departments
Ultimate Proposed Data Linkage/Sharing
Scheme
:
Common Anchor Data.for CSHCN
Linked :to
Linked to
:
Electronic Birth
Certificate and
Vital Records
Immunizations
WIC
EPSDT
Lead screening
TN-Dept.
of
T
- NBS
Health
and NHS
Genetic and
Child Dev.
Centers
Volunteer
e-Health
Initiative
I
TN-CHP
Comprehensive Child Health Profile
Tennessee Early
Intervention
(TEIS)
TennCare
Mental Retardation
Tennessee Child Health
Profile (TN-CHP)
DEMO website
Identifiers to search
NBS/NHS data

TDH number

Mother Social Security number

Mother last and first name, date
of birth and county of birth
Short Term Follow-up of
presumptive positive results
A summary of evaluations and
diagnostic tests performed at the
comprehensive genetic metabolic
centers, sickle cell centers or
pediatric endocrinologists is shown by
clicking on the box :
Confirmatory Test
Click on Confirmatory Test
Click on Confirmatory Test
Click on Confirmatory Test
Click on Confirmatory Test
Click on Confirmatory Test
Link Diagnosis to Resources
For MCAD the following
resources are linked to this
diagnosis
http://ghr.nlm.nih.gov/condition
=mediumchainacylcoenzymeadehydrog
enasedeficiency
http://www.savebabies.org/disease
descriptions/mcad.php
Example of abnormal
newborn hearing
screening results
After state report go to
search page and click on
Hearing Follow-up
(interactive page for provider
to record reports)
For educational
information on
Hearing Loss
Go to home page and click on
Newborn Hearing Screening
For information on long
term follow-up of
confirmed diagnosis
Go to Home page and click on
Child Data
(this information requires
parental consent)
Short and medium term
outcomes



Confirmed diagnosis is established and treatment is
started as soon as possible
Infants with confirmed diagnosis are followed and
treated by the appropriate specialist based on the
diagnosis (metabolic geneticist, hematologist or
endocrinologist) and follow-up information is reported
back to the primary care physician and to the other
specialists involved in the care of the child.
Infants with confirmed diagnosis have a medical home
that coordinates care with the specialists and with
other resources in the community beginning as soon as
possible within the first year of life.
Long term outcomes




Children have received consistent treatment and
monitoring of the diagnosed condition and show
medical signs of compliance with the treatment.
Prevention of developmental delay and behavioral
problems by appropriate treatment measured by
psychological and behavioral assessments.
Reduction of known complications such as sepsis or
pain crisis in conditions such as sickle cell disease
Children with confirmed diagnosed have a consistent
medical home and receive early intervention services
as needed and are transitioned to educational
services as needed.
FUTURE PLANS




Offer electronic reporting of NBS and NHS to
all physicians and other health care
providers registered with the state.
Collaborate and coordinate services with all
information exchange programs in the state.
Link TN-CHP to other TDH databases such as
Birth Certificates and other Vital Records,
Immunizations, WIC, and lead screening
Link to other databases: Early Intervention
Services, TN Care, BC/BS Share Health
Acknowledgments




Project Partners
Members of the Statewide Genetics
Coordinating Committee
Staff at the Tennessee Departments
of Health
Support:
HRSA grant U34MC00230-04
AHRQ grants P20HS015426-01
and 1-UC1-HS016133-03
Contact Information
Carmen B Lozzio, M.D. FACMG
Program Director of TN-CHP
[email protected]
Phone: (865) 544-9031

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