CHILD HEALTH PROFILE FOR CHILD HEALTH PROFILE FOR CHILDREN WITH SPECIAL HEALTH CHILDREN WITH SPECIAL HEALTH

CARE NEEDSCARE NEEDSAAP Annual Meeting AAP Annual Meeting

Council on Clinical Information Technology-October Council on Clinical Information Technology-October 28,200728,2007

Carmen B. Lozzio, MD, FACMGCarmen B. Lozzio, MD, FACMG

Brent Shelton, PhDBrent Shelton, PhD

Rosalyn Lemak MPH,Rosalyn Lemak MPH,

Billy R Hancock, Billy R Hancock,

Robert Eubanks, MS and Robert Eubanks, MS and

Michelle Liao, MSMichelle Liao, MS

University of Tennessee-Graduate School of Medicine, Knoxville, TNUniversity of Tennessee-Graduate School of Medicine, Knoxville, TN

Department of Medical Genetics, Univ. of Tennessee, Graduate Department of Medical Genetics, Univ. of Tennessee, Graduate

School of Medicine, Knoxville, TNSchool of Medicine, Knoxville, TN

Disclosures for Disclosures for Carmen B. Lozzio, MD, FACMGCarmen B. Lozzio, MD, FACMG

A.“I have no relevant financial A.“I have no relevant financial relationships with the relationships with the manufacturers (s) of any manufacturers (s) of any commercial products (s) and/or commercial products (s) and/or provider of commercial services provider of commercial services discussed in this CME activity.”discussed in this CME activity.”

B.I B.I do notdo not intend to discuss an intend to discuss an unapproved/investigative use of unapproved/investigative use of a commercial product/device in a commercial product/device in my presentation my presentation

GOALS OF THE PROJECTGOALS OF THE PROJECT Improve quality of health care for CSHCN Improve quality of health care for CSHCN

by summarizing all relevant information by summarizing all relevant information in an electronic health record called TN in an electronic health record called TN Child Health Profile (TN-CHP)Child Health Profile (TN-CHP)

Expand HIT by linking public health Expand HIT by linking public health databases with genetic, developmental databases with genetic, developmental and educational data on each childand educational data on each child

Make available to providers and Make available to providers and parents/legal guardians a secure, web parents/legal guardians a secure, web based TN-CHPbased TN-CHP

The Tennessee Child Health The Tennessee Child Health Profile (TN-CHP) is a web-based Profile (TN-CHP) is a web-based e-health record that condenses e-health record that condenses the highlights of each child’s the highlights of each child’s medical diagnosis, special needs, medical diagnosis, special needs, and recent services and and recent services and evaluations into a concise, easy-evaluations into a concise, easy-to-read summary, so that to-read summary, so that authorized providers can quickly authorized providers can quickly determine appropriate next determine appropriate next steps. In addition, parents who steps. In addition, parents who opt to have their children opt to have their children included in the system will be included in the system will be able to view their children’s able to view their children’s profiles online.profiles online.

TN-CHP GOALS:TN-CHP GOALS: Improve health care delivery, Improve health care delivery,

coordination of services, continuity coordination of services, continuity of care and timeliness of follow-up of care and timeliness of follow-up

Provide comprehensive medical,Provide comprehensive medical,

developmental and case developmental and case management data from a single management data from a single secure websitesecure website

Allow long term tracking and Allow long term tracking and avoid avoid “lost” cases“lost” cases

Participating InstitutionsParticipating Institutions UT Graduate School of Medicine-Knoxville,UT Graduate School of Medicine-Knoxville,

Department of Medical GeneticsDepartment of Medical Genetics

Memorial Hospital/UHSMemorial Hospital/UHS, Department of , Department of Information Service, KnoxvilleInformation Service, Knoxville

Vanderbilt UniversityVanderbilt University Department of Department of Pediatrics -Genetic Center, Center forPediatrics -Genetic Center, Center for Child Child DevelopmentDevelopment

UT Health Sciences Center (Memphis)UT Health Sciences Center (Memphis) Boling Center for Developmental Boling Center for Developmental Disabilities and Genetic CenterDisabilities and Genetic Center

Additional CollaborationsAdditional Collaborations Tennessee Department of HealthTennessee Department of Health

Vanderbilt e-Health InitiativeVanderbilt e-Health Initiative

HRSA- Regional Grant: SERGG HRSA- Regional Grant: SERGG

Connections Community of Practice- Connections Community of Practice- Public Health Informatics InstitutePublic Health Informatics Institute

AHRQ-Resource CenterAHRQ-Resource Center

TN-CHP Pilot Phase TN-CHP Pilot Phase in East TNin East TN

TN-CHP

Newborn Screening

Hearing Screening

Birth Certificate

UT Genetic Center

Pediatric Endocrinologists

Other Databases

Acute Care

Hospitals

Local health departments

Pediatricians and Other Providers

Link

VPN

Link

Secure Web

Parent Control

Secure Web

Secure Web

Statewide implementation of Statewide implementation of Tennessee Child Health ProfileTennessee Child Health Profile

(TN-CHP)(TN-CHP)

TN-CHP

Newborn Screening

Hearing Screening

Birth Certificate

Genetics and Sickle Cell Centers

Pediatric Endocrinologists Other

Databases

Acute Care

Hospitals

Local health departments

Pediatricians and Other Providers

Link

VPN

Link

Secure Web

Parent Control

Secure Web

Secure Web

TN-CHP AHRQ Grant for TN-CHP AHRQ Grant for Children with Special Healthcare Children with Special Healthcare

NeedsNeeds

TN-CHP

Disorders Detected byNewborn Screening

(NBS)

Genetic Disorders Detected by Genetic

Centers

Hearing Loss Confirmed after NHS

Developmental Disabilities Diagnosed by Child Development

Centers

Other Databases

Acute Care Hospital

Child Development

Centers

Pediatricians

Parent Control

Secure Web

Volunteerr e-Health Initiative

Genetic Centers

Local Health Departments

TN-CHILD HEALTHPROFILE

Ultimate Proposed Data Linkage/Sharing Ultimate Proposed Data Linkage/Sharing

SchemeScheme

Linked to :

Linked to :

Common Anchor Data for CSHCN :

.

Electronic BirthCertificate andVital Records

ImmunizationsWIC

EPSDTLead screening

Tennessee Early Intervention

(TEIS)TennCare

Mental Retardation

Genetic and Child Dev. Centers

T -

TN-CHP Comprehensive Child Health Profile-

Volunteer

e-Health Initiative

I

TN-Dept. of Health NBS and NHS

Tennessee Child Health Tennessee Child Health ProfileProfile ((TN-CHP)TN-CHP)

DEMO websiteDEMO website

Identifiers to search Identifiers to search NBS/NHS dataNBS/NHS data

TDH numberTDH number

Mother Social Security numberMother Social Security number

Mother last and first name, date Mother last and first name, date of birth and county of birthof birth and county of birth

Short Term Follow-up of Short Term Follow-up of presumptive positive resultspresumptive positive results

A summary of evaluations and A summary of evaluations and diagnostic tests performed at the diagnostic tests performed at the comprehensive genetic metabolic comprehensive genetic metabolic centers, sickle cell centers or centers, sickle cell centers or pediatric endocrinologists is shown pediatric endocrinologists is shown by clicking on the box :by clicking on the box :

Confirmatory TestConfirmatory Test

Click on Confirmatory TestClick on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

Click on Confirmatory Test

Link Diagnosis to ResourcesLink Diagnosis to Resources

For For MCAD MCAD the following the following resources are linked to this resources are linked to this

diagnosisdiagnosis

http://ghr.nlm.nih.gov/conditionhttp://ghr.nlm.nih.gov/condition=mediumchainacylcoenzymeadehydrogenas=mediumchainacylcoenzymeadehydrogenasedeficiencyedeficiency

http://www.savebabies.org/diseasehttp://www.savebabies.org/diseasedescriptions/mcad.phpdescriptions/mcad.php

Example of abnormal Example of abnormal newborn hearing newborn hearing screening resultsscreening results

After state report go to After state report go to search page and click onsearch page and click on

Hearing Follow-upHearing Follow-up(interactive page for provider (interactive page for provider

to record reports)to record reports)

For educational For educational information on information on Hearing LossHearing Loss

Go to home page and click onGo to home page and click on

Newborn Hearing Screening Newborn Hearing Screening

For information on long For information on long term follow-up of term follow-up of

confirmed diagnosisconfirmed diagnosis

Go to Home page and click onGo to Home page and click on

Child DataChild Data(this information requires (this information requires

parental consent)parental consent)

Short and medium term Short and medium term outcomesoutcomes

Confirmed diagnosisConfirmed diagnosis is established and treatment is is established and treatment is started as soon as possiblestarted as soon as possible

Infants with confirmed diagnosis Infants with confirmed diagnosis are followed and are followed and treated by the appropriate specialisttreated by the appropriate specialist based on the based on the diagnosis (metabolic geneticist, hematologist or diagnosis (metabolic geneticist, hematologist or endocrinologist) and follow-up information is reported endocrinologist) and follow-up information is reported back to the primary care physician and to the other back to the primary care physician and to the other specialists involved in the care of the child. specialists involved in the care of the child.

Infants with confirmed diagnosis Infants with confirmed diagnosis have a medical homehave a medical home that coordinates care with the specialists and with that coordinates care with the specialists and with other resources in the community beginning as soon as other resources in the community beginning as soon as possible within the first year of life. possible within the first year of life.

Long term outcomesLong term outcomes Children have received consistent treatmentChildren have received consistent treatment and and

monitoring of the diagnosed condition and show monitoring of the diagnosed condition and show medical signs of compliance with the treatment.medical signs of compliance with the treatment.

Prevention of developmental delay and behavioral Prevention of developmental delay and behavioral problemsproblems by appropriate treatment measured by by appropriate treatment measured by psychological and behavioral assessmentspsychological and behavioral assessments. .

Reduction of known complicationsReduction of known complications such as sepsis or such as sepsis or pain crisis in conditions such as sickle cell diseasepain crisis in conditions such as sickle cell disease

Children with confirmed diagnosed have a consistent Children with confirmed diagnosed have a consistent medical homemedical home and receive and receive early intervention servicesearly intervention services as needed and are as needed and are transitioned to educational transitioned to educational services as neededservices as needed. .

FUTURE PLANSFUTURE PLANS Offer Offer electronic reporting of NBS and NHSelectronic reporting of NBS and NHS to all to all

physicians and other health care providers physicians and other health care providers registered with the state.registered with the state.

Collaborate and coordinate servicesCollaborate and coordinate services withwith all all information exchange programsinformation exchange programs in the state. in the state.

Link TN-CHP to other TDH databasesLink TN-CHP to other TDH databases such as such as Birth Certificates and other Vital Records, Birth Certificates and other Vital Records, Immunizations, WIC, and lead screeningImmunizations, WIC, and lead screening

Link to other databasesLink to other databases: Early Intervention : Early Intervention Services, TN Care, BC/BS ShareServices, TN Care, BC/BS Share HealthHealth

AcknowledgmentsAcknowledgments Project PartnersProject Partners Members of the Statewide Genetics Members of the Statewide Genetics

Coordinating CommitteeCoordinating Committee Staff at the Tennessee Departments Staff at the Tennessee Departments

of Healthof Health Support: Support:

HRSA grant HRSA grant U34MC00230-04U34MC00230-04

AHRQ grants P20HS015426-01AHRQ grants P20HS015426-01

and 1-UC1-HS016133-03and 1-UC1-HS016133-03

Contact InformationContact Information

Carmen B Lozzio, M.D. FACMGCarmen B Lozzio, M.D. FACMGProgram Director of TN-CHPProgram Director of TN-CHP

clozzio@utmck.edu

Phone: (865) 544-9031Phone: (865) 544-9031