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The State of ATHN in 2008

The State of ATHN in 2008. 2008 Data Summit July 31 – August 1, 2008 Presenter: Diane J. Aschman. The State of ATHN in 2008. Who we are What we are doing Where we are headed. ATHN: Who We Are. ATHN…founded July, 2006. Not-for-profit organization Created by HTCs

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The State of ATHN in 2008

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  1. The State of ATHN in 2008 2008 Data Summit July 31 – August 1, 2008 Presenter: Diane J. Aschman

  2. The State of ATHN in 2008 • Who we are • What we are doing • Where we are headed

  3. ATHN: Who We Are

  4. ATHN…founded July, 2006 • Not-for-profit organization • Created by HTCs • 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 Medical Records ATHN UDC

  5. ATHN Core Values • Improve clinical outcomes • Facilitate continuity of care • Foster collaboration • Maintain confidentiality • Conserve resources through a common infrastructure

  6. Amy Shapiro, MD (chair) Tom Abshire, MD (chair elect) Jeanne Lusher, MD (past chair) Bob Fox (treasurer) Steve Humes (secretary) Ellis Neufeld, MD, PhD Michael Recht, MD W. Keith Hoots, MD David Green, MD, PhD Sue Cutter Patricia Dominic Ann Forsberg Tom Ortel, MD, PhD Tami Wood-Lively Wanda Foster (consumer) Diane Aschman (CEO) Roshni Kulkarni, MD (non-voting CDC Liaison) Thank you for 2006-2007 Mary Lou Damiano Robi Ingram Rich Dana Matthews, MD A Dedicated ATHN Board of Directors

  7. Who Does ATHN Represent? • Federally funded hemophilia and thrombosis treatment centers across the U.S. • >50% of centers signed on to date • ATHN Affiliates in all regions

  8. ATHN Affiliate: Steady Growth 72 as of 07/10/08!

  9. ATHN Affiliates by Region (72 as of 07 10 08)Potential and Actual Thank You Regional Coordinators

  10. ATHN Affiliates Span Electronic and Paper UDC Record Submitters (72 Affiliates as of 07 10 08)

  11. ATHN Affiliates Span All Lab Tracker User Levels as Reported in the HTC Survey HTC Survey Respondents: 79 (59%) HTCs 39 (57%) Affiliates Super User: Use as medical record AND for more than annual visits AND capture core data plus infusions or non-coag meds Core User: Captures core data (i.e., demographics, diagnoses, coagulation meds, surgeries, labs, contact info, insurance) AND uses for either medical record or more than annual visits Early User: Captures at least demographics and diagnoses

  12. ATHN Affiliates: 340B and Non-340B Indicator: Membership in Hemophilia Alliance

  13. Who do ATHN Affiliates Represent? (Over 350 clinicians in 69 HTCs) Source: ATHN Affiliate application. ~10% not reported Outreach coordinators, genetic counselors, dieticians, dentists also reported

  14. Broad External Collaborations • HTRS, MASAC, VDC, • EAHAD, EN-RBD… • Harmonized approach • Evidence base as a community resource • Avoid redundancy Provider • CDC, MCHB, FDA, NHLBI, NCPHI • Support government mandates • Quality • Effectiveness • Surveillance ATHN Consumers Government NHF, HFA, COTT, NATT, WFH… Working together for the good of the community

  15. ATHN: What We Are Doing

  16. ATHN Milestones – Year 2 7/07 10/07 1/08 4/08 7/08 Rare Bleeding Disorders Grants WFH Emergency Preparedness Grant from CDC Novo Nordisk unrestricted Grant – year 2 CDC MOU ATHNreport Newsletter 1st ATHN Affiliate $400,000 Data Management Funding Data Quality Counts NHF Exhibit www.athn.org Board Selection (1/3 new) Community Liaison Group HTC Survey

  17. ATHN: Where We Are Headed

  18. ATHN’s Strategic Direction Network Infrastructure Data Management Public Health and Safety Outcomes Improvement Data Analysis and Research Develop electronic database capacity Data safety, back-up, and portability Support surveillance and patient safety Use data to drive quality, service, and patient centered care Facilitate knowledge creation and advocacy

  19. Top 10 Priorities • Growth of ATHN Affiliates • 100% HTCs - 2009 • Non-federally funded centers – to be explored • >$400,000 funding for Data Management • Rollout of Lab Tracker (web) - 2009 • Pilot test ATHNready – emergency preparedness • Rare Bleeding Disorders – web portal • Thrombosis - strategy • Merger with HTRS - discussion ongoing • 1st Industry Liaison Group – November • Promote research through the network • Continued coordination with CDC

  20. ATHN’s Target State: A Real Resource for the Community

  21. Summary • ATHN is gaining acceptance and building momentum • Strategically and financially positioned to add capacity and provide support • Outcomes and insights generated will improve patient care • www.athn.org Let’s Celebrate!

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