The State of ATHN in 2008
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2008© COPYRIGHT The State of ATHN in 2008 2008 Data Summit July 31 – August 1, 2008 Presenter: Diane J. Aschman
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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 - PowerPoint PPT Presentation
Transcript of The State of ATHN in 2008
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The State of ATHN in 2008
2008 Data SummitJuly 31 – August 1, 2008Presenter: Diane J. Aschman
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The State of ATHN in 2008
• Who we are
• What we are doing
• Where we are headed
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ATHN: Who We Are
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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
ATHN
UDC
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ATHN Core Values
• Improve clinical outcomes
• Facilitate continuity of care
• Foster collaboration
• Maintain confidentiality
• Conserve resources through a common infrastructure
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A Dedicated ATHN Board of Directors
• 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
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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
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ATHN Affiliate: Steady Growth
0
10
20
30
40
50
60
70
80
Oct. Nov. Dec. Jan. Feb. Mar. Apr. May June July Aug.
ATHN Affiliates
72 as of 07/10/08!
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ATHN Affiliates by Region (72 as of 07 10 08)Potential and Actual
0
2
4
6
8
10
12
14
16
18
I II III IV-N IV-S V-E V-W VI VII VIII IX X
Total HTCs ATHN Affiliates
Thank You
Regional Coordinators
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ATHN Affiliates Span Electronic and Paper UDC Record Submitters
0102030405060708090
100
# HTCs
Electronic Paper
Records submitted via Lab Tracker in 2007
Not Affiliate
Affiliate
(72 Affiliates as of 07 10 08)
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ATHN Affiliates Span All Lab Tracker User Levels as Reported in the HTC Survey
0
5
10
15
20
25
30
35
SuperUser
Core User EarlyUser
Non User
Total
Affiliates
Super User: Use as medical record AND for more than annual visits AND capture core data plus infusions or non-coag medsCore 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
HTC Survey Respondents:
79 (59%) HTCs39 (57%) Affiliates
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ATHN Affiliates: 340B and Non-340B
0%10%20%30%40%50%60%70%80%90%
100%
ATHN Affiliates All HTCs
Non-340B
340B
Indicator: Membership in Hemophilia Alliance
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Who do ATHN Affiliates Represent? (Over 350 clinicians in 69 HTCs)
0
20
40
60
80
100
120
140
Affiliate Regions
MD
RN
PT
LSW
Data Mgr
Source: ATHN Affiliate application. ~10% not reportedOutreach coordinators, genetic counselors, dieticians, dentists also reported
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Broad External Collaborations
Provider
Consumers Government
ATHN
HTRS, MASAC, VDC,EAHAD, EN-RBD…Harmonized approach
• Evidence base as a community resource
• Avoid redundancy
CDC, MCHB, FDA, NHLBI, NCPHISupport government mandates
•Quality•Effectiveness•Surveillance
NHF, HFA, COTT, NATT, WFH…Working together for the good of the community
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ATHN: What We Are Doing
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ATHN Milestones – Year 2
7/07 10/07 1/08 4/08 7/08
Novo Nordiskunrestricted
Grant – year 2
Community Liaison Group
HTC Survey
CDCMOU
$400,000 Data
ManagementFunding
Data QualityCounts
Emergency Preparedness
Grant from CDC
Board Selection(1/3 new)
1st ATHN Affiliate
NHFExhibit
ATHNreportNewsletter
www.athn.org
Rare Bleeding Disorders
Grants
WFH
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ATHN: Where We Are Headed
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ATHN’s Strategic Direction
Network Infrastructure
Data Management
Public Health and Safety
Outcomes Improvement
Data Analysis and Research
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
Develop electronic database capacity
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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
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ATHN’s Target State: A Real Resource for the Community
ATHN Community
Secure infrastructure Emergency preparedness
Patient clinical characteristics
Site selection, patient recruitment & support for treatment studies
Evidence of clinical practices and outcomes
Recommendations of best practices/standards
Data on treatment economics and QOL
Fact-based advocacy and public health promotion
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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!
