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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

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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

Department of Medical Genetics, Univ. of Tennessee, Graduate School of Medicine, Knoxville, TN

disclosures for carmen b lozzio md facmg
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
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
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Tennessee Child Health Profile

The Tennessee Child Health Profile (TN-CHP) is a web-based 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.

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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
slide6
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 forChild Development
  • UT Health Sciences Center (Memphis)

Boling Center for Developmental

Disabilities and Genetic Center

slide7
Additional Collaborations
  • Tennessee Department of Health
  • Vanderbilt e-Health Initiative
  • HRSA- Regional Grant: SERGG
  • Connections Community of Practice- Public Health Informatics Institute
  • AHRQ-Resource Center
slide10
Acute Care

Hospital

Disorders Detected by

TN-CHP

Newborn Screening

(NBS)

Genetic

Centers

Hearing Loss

Secure

Confirmed after NHS

Web

Child

Development

Genetic Disorders

Volunteer

r

Centers

Detected by Genetic

e

-

Health

Centers

Initiative

Parent

Control

Pediatricians

Developmental

Disabilities Diagnosed

Other

by Child Development

Databases

Local Health

Centers

Departments

TN-CHP AHRQ Grant for Children with Special Healthcare Needs

TN-CHILD

HEALTH

PROFILE

slide11
:

.

Common Anchor Data for CSHCN

:

:

Linked to

Linked to

Genetic and

Electronic Birth

Certificate and

Vital Records

Immunizations

WIC

EPSDT

Lead screening

Tennessee Early

Intervention

(TEIS)

TennCare

Mental Retardation

TN

-

Dept. of

T

Child Dev.

-

Health

NBS

Centers

and NHS

Volunteer

e

-

Health

Initiative

I

TN-CHP Comprehensive Child Health Profile

-

Ultimate Proposed Data Linkage/Sharing Scheme

identifiers to search nbs nhs data
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
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

slide23
Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

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Link Diagnosis to Resources

For MCAD the following resources are linked to this diagnosis

http://ghr.nlm.nih.gov/condition

=mediumchainacylcoenzymeadehydrogenasedeficiency

http://www.savebabies.org/disease

descriptions/mcad.php

slide27
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

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

For information on long term follow-up of confirmed diagnosis

Go to Home page and click on

Child Data

(this information requires parental consent)

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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.
slide55
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.
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FUTURE PLANS
  • Offer electronic reporting of NBS and NHS to all physicians and other health care providers registered with the state.
  • Collaborate and coordinate serviceswith 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 ShareHealth
slide57
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

slide58
Contact Information

Carmen B Lozzio, M.D. FACMG

Program Director of TN-CHP

[email protected]

Phone: (865) 544-9031

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