2008© COPYRIGHT American Thrombosis & Hemostasis Network Maximizing Utilization of Lab Tracker Presenter: Ann Forsberg

2008© COPYRIGHT 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

2008© COPYRIGHT 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 web version

2008© COPYRIGHT 4 ATHN’s Strategic Direction Ways 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

2008© COPYRIGHT 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

2008© COPYRIGHT 6 Outcome Data Public Health Departments Medicare/Medicaid Insurance Companies MCHB/CDC 340B Programs Granting Agencies Patients Consumer Organizations Regulatory Agencies Recognized need to provide health outcome data:

2008© COPYRIGHT 7 Types of Outcomes Measure and improve integrated patient care services Measure and improve health outcomes

2008© COPYRIGHT 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 FunctionIn Children with normal Lung Function 72% 86%56% In Children with abnormal Lung FunctionIn Children with abnormal Lung Function 70% 91% 64% n Adults with mild diseasen Adults with mild disease 47% 74% 41%II n Adults with moderate to severe diseasen Adults with moderate to severe disease 75% 83%3%

2008© COPYRIGHT 9 Our CenterTop 10 CentersUS 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/m 2 21 k/m 2 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

2008© COPYRIGHT 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)

2008© COPYRIGHT 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

2008© COPYRIGHT 12 Maximizing Labtracker - Health Indicators Mortality rates Joint disease Surgical interventions Development of inhibitors Co-morbidities Emergency room visits Obesity

2008© COPYRIGHT 13 Performance Improvement of US HTCs Standards and Criteria for the Care of Persons with Hemophilia (MASAC 2002)

2008© COPYRIGHT 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

2008© COPYRIGHT 15 In the Future Expansion of data elements for bleeding disorders Expansion to include thrombotic disorders International harmonization