amchp 2005 conference linking public health databases: developing partnerships, infrastructure, and...

AMCHP 2005 Conference

Linking Public Health Databases: Developing Partnerships,

Infrastructure, and Testing

David Hollar, Michael Copeland, Carmen Lozzio, Teresa Blake, Lee Fleshood, Matthew Evans, Robert

Eubanks, & Ramona Lainhart* University of Tennessee Department of

Medical Genetics *Tennessee Department of Health

AMCHP 2005 ConferenceElectronically Linked Health

Databases • Improve health care delivery • Provide single secure website access • Provide comprehensive medical data• Reduce redundancies & medical

errors• Long-term tracking • Avoid “lost cases”


Tennessee Genetics PlanThe purpose of the statewide genetics plan is to integrate the Newborn Genetic Screening (NBS) Program and other genetic services into the Information Technology (IT) Plan to assure an adequate public health infrastructure and to coordinate genetic services with all other programs for children with special health care needs (CSHCN).


Major Goals1. Develop an electronic child health

profile that links data from Newborn Genetic/Metabolic Screening, Hearing Screening, Birth Certificate, and Vital Records for all children born in Tennessee.

2. Make this information available in a secure, accessible format for

providers, with permission.


Tennessee Child Health Profile

TN-CHP (TN

Health Dept.)

Newborn Screening

Hearing Screening

Birth Certificate

Vital Statistics

Case Management Data

UT Developmental & Genetic Ctr.

CSS Case Managers

Pediatric Endocrinologists

at East TN Children’s Hosp.

Link

VPN

Link

Parent Control

Secure Web

AMCHP 2005 ConferencePartners

• UT Department of Medical Genetics• Tennessee Department of Health

Office of Policy, Planning, & AssessmentOffice of Information TechnologyOffice of MCHTennessee State Laboratory

Genetics & Newborn ScreeningNewborn Hearing Screening Program


Project Development• IRB Approvals from:

UT Graduate School of MedicineTennessee Department of Health

• Project Approval fromTennessee Office of Information Resources, Department of Finance and Administration

AMCHP 2005 ConferenceProject Guidance

• State Genetics Coordinating Committee:

Three Genetic Centers EPSDT – Bureau of TennCareTN Department of Health

TEIS – TN Dept. Education

TN Division of Mental Retardation Services

Child Development Centers

Universities

Council on Developmental Disabilities – TN Dept. Mental Health & Dev. Dis.

Consumers

Legislators

AMCHP 2005 ConferenceChildren with Genetic/Metabolic Conditions in Tennessee, 2003

• n = 125 confirmed (78,841 live births)• Six Conditions:

Phenylketonuria Congenital Hypothyroidism Hemoglobinopathies Galactosemia Congenital Adrenal Hyperplasia Biotinidase Deficiency


Conditions Added in 2004• Homocystinuria

• Maple Syrup Urine Disease (MSUD)

• Medium Chain Acyl CoA Dehydrogenase Deficiency (MCADD)

• 50 Other Amino Acid, Organic Acid, &

Fatty Acid Oxidation Disorders


Confirmed Positives (2004)

Phenylketonuria 7Galactosemia 25Congenital Hypothyroidism

57

Hemoglobinopathy 54CAH 7Biotinidase Deficiency 5MCAD 4Acylcarnitines 9Amino Acids 1

N = 80,976 births


Major Tasks

• Developing Partnerships• Sharing Data• Major Successes• Setbacks and Challenges• Linking Data• Implementation

AMCHP 2005 ConferenceDeveloping Partnerships

• Identify Key Holders of Data• Identify Liaison Experts• Communication with Directors• Work through Influential

Supporters• Clearly Outline Project & Benefits• Identify & Address Partner Needs• Maintain Intensity & Momentum


Sharing Data

• Address Data Silo Issues• Demonstrate Project Efficacy• Communicate with Data Holders• Insure Data Integrity & Security• Accountability


Major Successes

• Data Sharing Agreements• Linkages for Three Databases• OIR Project Approval• Two IRB Approvals• Involvement of Case Managers• AHRQ IT Planning Grant Award• Volunteer e-Health Collaboration


Statewide Cooperation


Setbacks and Challenges

• Personnel Changes at the TN Department of Health

• Technical Issues• Solutions Obtained through

Teamwork


Linking Data

• Matching Records between Databases• Identifier Issues• Data Duplications• Other Issues• Approaches at Solutions

AMCHP 2005 ConferenceMatching Databases

Database Present in 1990-1995

Present in1996-2002

NBS Alone 15 232

Birth Alone 78 6

NBS-Birth 20 (.18) 391 (.62)

Total 113 629

Number of Records

308 3733

% Female .52

% Minority .19

Stratified Random Samples (16/1 x 105)

AMCHP 2005 ConferenceMatching Identifiers

Identifier Match ‘90-’95 Match ‘96-’02

Child’s Last Name

1.00 .903 - .916

Child’s First Name

.80 .205-.255

Date of Birth .95 .995-1.00

Ethnicity 1.00 .964

Gender 1.00 .995

Mother’s LN 1.00 .967-.984

Mother’s FN .90-1.00 .951-.989

Mother Maiden

.30 .266-.274

Mother’s SSN .45-.50 .890-.923

County .70b .95m .627b ..872m


Implementation

• Secure Web Browser Development• Involvement of Case Managers• Case Manager Questionnaire• Training Session• Pilot Test


Methods of Evaluation I• Percentage confirmed matches on subsequent

passes• Percentage of live born infants screened• Percentage of live born infants adequately

screened• Timeliness of diagnoses & timeliness of

treatments• Long-term assessment of infants with positive conditions for developmental delay, morbidity, etc.


Methods of Evaluation II• Percentage of false positives per test• Percentage of infants with pre-birth

identified medical home• Percentage of public providers submitting

data to the integrated database• Percentage of private providers

submitting data to the integrated database• User satisfaction with TN-CHP• Parental satisfaction


Project Expansion


AHRQ IT Planning Grant

UT-CHP

Disorders Detected by Newborn 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

Centers

Pediatricians

Parents Control

Secure Web

Volunteer e-Health Initiative

Genetic Centers


AHRQ Partners• UT Department of Medical Genetics,

Knoxville• UHS, Department of Information Services• Vanderbilt University Department of

Pediatrics -Genetic Center, Center for Child Development, & Department of Biomedical Informatics

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


Statewide Cooperation!


Additional Collaborations

• SERGG Regional Grant

• PHII Connections Community of Practice

• Public Health Data Standards Consortium

• Correspondence with other HRSA and AHRQ grantees, EHDI projects, etc.


Long – Range Goal

Linked to:

Linked to:

Common Anchor Public Health Data for CSHCN: Metabolic Disorders Detected by NBS, Hearing Loss Confirmed after NHS.

Electronic Birth Certificate & Vital

Records

TEIS, TennCare, & Mental

Retardation Databases Plus Developmental

Disability Data on Children from

Centers

UT-CHP

TN-CHP

Comprehensive Expanded TN-CHP

for Children

Volunt. e-

Health Initiativ

e


Acknowledgments

• Members of the State Genetics Coordinating Committee

• Staff at the Tennessee Departments of Health & Education, TN Early Intervention Services

• Support:HRSA Grant # 1 U93 MC 00230-01 and AHRQ Grant #1 P20 HS015426-01


For More Information• Contact:

David W. Hollar, Jr., PhD(865) [email protected]

Carmen B. Lozzio, MD, FACMG(865) [email protected]

amchp 2005 conference linking public health databases: developing partnerships, infrastructure, and...

Documents