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American Thrombosis & Hemostasis NetworkMaximizing Utilization of Lab TrackerPresenter: Ann Forsberg
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ATHN…founded July, 2006
• Committed to One National Data Source for the Hemostasis and Thrombosis Community
• ATHN’s mission is to provide stewardship of a secure national database used to support – Outcomes analyses
– Research – Advocacy– Public Health
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A Convergence of Needs
Knowledge that other countries (e.g., U.K., Sweden, Canada) have robust data sets
Recognition of Need for…
data safety, portability, back-upclinical outcomes data
evidence-based clinical standards ONE national clinical database consolidate/conserve resources
Adoption of Lab Tracker
2000 development2002 rollout
2003 UDC forms2005 as national tool2005-8 web version
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ATHN’s Strategic DirectionWays HTCs Utilize Database in Lab Tracker
Network Infrastructure
Outcomes Improvement
Public Health and Safety
Outcomes Improvement
Data Analysis and Research
Use data to drive quality, service, and patient centered care
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Maximizing Uses of LabTracker
•Collection of data for clinical management and evaluation
•Collection of national outcome data
•Outcome improvement
•Expansion of data collection for other disease groups
• International harmonization
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Outcome Data
Public Health Departments
Medicare/Medicaid
Insurance Companies
MCHB/CDC
340B Programs
Granting Agencies
PatientsConsumer Organizations
Regulatory Agencies
Recognized need to provide health outcome data:
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Types of Outcomes
• Measure and improve integrated patient care services
• Measure and improve health outcomes
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Care Provision Performance CF
• Guidelines recommend evaluation at an accredited CF center quarterly
• Standardized Measures– Pulmonary testing semiannually– Culture of respiratory secretions semiannually
Our Center Top 10 Centers US Average
In Children with normal Lung Function 72% 86% 56%In Children with abnormal Lung Function 70% 91%
64%n Adults with mild disease 47% 74% 41%In Adults with moderate to severe disease 75% 83%
3%
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Our Center Top 10 Centers US Average
Lung Function in Children 6 to 12 years
104% 103% 92%
Lung Function in Children 13 to 17 years
88% 96% 85%
Lung Function in Adults 18 to 30 years
77% 78% 65%
Lung Function in Adults older than 30 years
59% 64% 52%
Median BMI percentile patients 2 to 20 years
52% 58% 44%
Median BMI for patients older than 21 years
22 k/m2 21 k/m2 21 k/m2
Proportion of Children in nutritional failure
17.1% 17.8% 32.3%
Proportion of Adults in nutritional failure
29% 25% 42%
Performance measures for CF Outcomes
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National Collection of Health Indicators
•Hemophilia Data Set
•Universal Data Collection
•MCHB Indicators
–Performance Measure 7 (Family participation)
–Form 5 (Insurance coverage and demographics)
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Maximizing Lab Tracker - Care Performance
• Templates for national outcome reportsCenter and regional comparisons of service utilization
Comprehensive care visitsDiagnostic services
Number of diagnostic services performedAge of diagnosis
Genetic services/testingProvider contacts Patient follow-upPatients on prophylaxisPatients on home therapy
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Maximizing Labtracker - Health Indicators
Mortality ratesJoint diseaseSurgical interventionsDevelopment of inhibitorsCo-morbidities Emergency room visitsObesity
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Performance Improvement of US HTCs
• Standards and Criteria for the Care of Persons with Hemophilia (MASAC 2002)
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What is an HTC?
National HTC Survey •Implemented by Regional Coordinators byeSurvey linked to ATHN website•Descriptive data extracted from HDS and provided by HTC staff
– Staff mix and experience– Impatient services – Outreach efforts– Laboratory services– Demographics
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In the Future
• Expansion of data elements for bleeding disorders
• Expansion to include thrombotic disorders
• International harmonization
