American Thrombosis & Hemostasis Network

1. American Thrombosis & Hemostasis Network Maximizing Utilization of Lab Tracker Presenter: Ann Forsberg

2. 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

3. 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-up clinical outcomes data evidence-based clinical standards ONE national clinical database consolidate/conserve resources Adoption of Lab Tracker 2000 development 2002 rollout 2003 UDC forms 2005 as national tool 2005-8 web version

4. ATHN’s Strategic DirectionWays HTCs Utilize Databasein 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

5. 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

6. Recognized need to provide health outcome data: OutcomeData Consumer Organizations Patients MCHB/CDC Regulatory Agencies Medicare/Medicaid Granting Agencies Insurance Companies 340B Programs Public Health Departments

7. Types of Outcomes • Measure and improve integrated patient care services • Measure and improve health outcomes

8. 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%I n Adults with moderate to severe disease 75% 83% 3%

9. Performance measures for CF Outcomes

10. National Collection of Health Indicators • Hemophilia Data Set • Universal Data Collection • MCHB Indicators • Performance Measure 7 (Family participation) • Form 5 (Insurance coverage and demographics)

11. Maximizing Lab Tracker - Care Performance • Templates for national outcome reports • Center and regional comparisons of service utilization • Comprehensive care visits • Diagnostic services • Number of diagnostic services performed • Age of diagnosis • Genetic services/testing • Provider contacts • Patient follow-up • Patients on prophylaxis • Patients on home therapy

12. Maximizing Labtracker - Health Indicators • Mortality rates • Joint disease • Surgical interventions • Development of inhibitors • Co-morbidities • Emergency room visits • Obesity

13. Performance Improvement of US HTCs • Standards and Criteria for the Care of Persons with Hemophilia (MASAC 2002)

14. What is an HTC? National HTC Survey • Implemented by Regional Coordinators by eSurvey 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

15. In the Future • Expansion of data elements for bleeding disorders • Expansion to include thrombotic disorders • International harmonization