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IMPROVING QUALTY OF CARE FOR CHILDREN TROUGH HEALTH IT Tennessee Project for Children with Special Health Care Needs AHRQ Annual Meeting September 26,2007 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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slide1

IMPROVING QUALTY OF CARE FOR CHILDREN TROUGH HEALTH IT

Tennessee Project for Children with Special Health Care Needs

AHRQ Annual Meeting

September 26,2007

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

slide2

IMPROVING QUALITY CARE FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS

Agency for Healthcare Research and Quality (AHRQ)

TRANSFORMING HEALTHCARE QUALITY THROUGH INFORMATION TECHNOLOGY (THQIT)

2004-Planning Grant

2005-2008:Implementation grant

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
slide4

TN grants for Genetics and Health Information Technology

  • 2001/03- HRSA Planning grant: one of 22 grants awarded to states, the only one for close collaboration between TN Dept of Health and academic Genetic Centers.
  • 2003/07- HRSA Implementation grant as one of five states awarded grants for Joint Program Initiative (Collaboration: Genetic Services Branch & Office of Data Integration and Management).
  • 2004-AHRQ Planning grant: one of 38 grants awarded. One thousands letters of intend submitted
  • 2005-AHRQ Implementation grant: one of 16 grants to use e-health to improve quality and safety of medical care. The only one for genetic services.
  • 2005-2006-SERGG/HRSA: Mini-grants awarded to collaborate with other states in the Southeast region.
slide5

Tennessee Genetics Plan for follow-up of NBS/NHS

  • Tennessee developed the Tennessee Genetics Plan in close collaboration of the Tennessee Department of Health, the academic genetic centers and members of a statewide Genetics Coordinating Committee.
  • The purpose of this plan is to integrate the information on Newborn Screening (NBS), Newborn Hearing Screening (NHS) and other genetic and developmental services to improve the long term follow-up and care of these children
  • A major accomplishment has been the development of an electronic child health profile: the Tennessee Child Health Profile (TN-CHP) that makes possible to provide information on NBS and NHS in a secure, accessible web format to providers registered with the state
slide6

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.

slide7

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
slide8

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

slide9

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
tn chp pilot phase 1

UT Genetic Center

UT Genetic Center

UT

UT

Newborn Screening (NBS)

Newborn Screening (NBS)

Newborn Screening (NBS)

Newborn Screening (NBS)

Link

Link

Link

Link

Genetic

Genetic

Center

Center

VPN

VPN

VPN

VPN

Newborn Hearing Screening

Newborn Hearing Screening

(NHS)

(NHS)

Link

Link

Link

Link

-

-

-

-

Repeat screening

Repeat screening

Repeat screening

Repeat screening

CSS

CSS

CSS

CSS

Secure

Secure

Secure

Secure

Case Managers

Case Managers

Case Managers

Case Managers

TN

TN

TN

TN

-

-

-

-

CHP

CHP

CHP

CHP

Web

Web

Web

Web

Diagnostic tests

Diagnostic tests

Diagnostic tests

Diagnostic tests

Treatment and

Treatment and

Follow-up

Treatment and

Follow-up

Treatment and

Follow

Follow

-

-

-

-

up

up

Pediatric

Pediatric

Pediatric

Pediatric

Endocrinologists

Endocrinologists

Endocrinologists

Endocrinologists

Parent

Parent

Parent

Parent

at

at

at

at

Consent

Consent

Consent

Consent

East TN

East TN

East TN

East TN

Children Hospital

Children Hospital

Children Hospital

Children Hospital

TN-CHP Pilot Phase 1

Newborn Hearing

Screening (NHS)

Newborn Hearing Screening

(NHS)

Newborn Hearing Screening

(NHS)

Newborn Hearing Screening

(NHS)

slide13

:

.

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

url for tn chp demo

URL for TN-CHP DEMO

http://gen01/mliao_test2/

Default.aspx

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

slide25

Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

slide28

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

slide29

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)

slide56

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.
slide57

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.
slide58

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
slide59

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-HS016133-02

slide60

Contact Information

Carmen B Lozzio, M.D. FACMG

Program Director clozzio@utmck.edu

Phone: (865) 544-9031

A website DEMO

is under development and can be accessed at:

http://gen01/mliao_test2/

Default.aspx