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ATHNready: Applying Lessons Learnedto Ensure that Medical Information is Safe, Secure and Portable
ATHN Data SummitJuly 31, 2008Presenter: Tami Wood-Lively
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Lessons Learned from Katrina: Harsh, High Profile Criticism Gets Results
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Recommendations Post Katrina*
• “Foster widespread use of interoperable electronic health records…”
• Develop a capacity for individuals to voluntarily to submit their personal identifying information for virtual storage that citizens and their families can access during emergencies…”
• “Ensure there is a mechanism to coordinate…”
The Federal Response to Hurricane Katrina – Lessons Learned, February 2006, http://whitehouse.gov/reports/katrina-lessons-learned.pdf
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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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ATHNready: Aligned With HHS Priorities
• Promote quality and efficient delivery of care through the use of health information technology, including data and messaging standards
• Collaboration is broad and inclusive with individual consumer and consumer organization involvement and input
• CDC provided funding through Cooperative Agreement, July 1, 2007 for ATHN to develop and implement ATHNready.
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ATHN’s Strategic Opportunities
Data Management
Data safety, back-up, and portability
• Through CDC cooperative agreement, create a disaster preparedness plan with adoption by HTCs and patients
• Assist HTCs to provide core meaningful data to patients on flash-drive
• Data encryption and redundant back-up
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Key Questions
• What can be done to avoid secondary complications in patient victims with bleeding disorders?
• How can HTCs plan for disasters and quickly return to pre-disaster standards of care delivery?
• How can HTCs help individuals prepare for disaster situations?
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1. Solid Infrastructure
• A solid infrastructure to collect evidence needed to inform public health promotion about preparedness and to take action during a disaster
– Integrated network with standard procedures
– List of core meaningful patient data needed to provide treatment and avoid complications
– Disaster preparedness plan for implementation
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What is Core Meaningful Data*?
• Primary diagnosis (disorder, severity)
• Co-morbidities (HIV, hepatitis, joint)
• Treatment regimens (product, dose, reason)
• Presence of inhibitors
• Infusion / Bleed status
• Allergies
• Insurance
• Demographic / Emergency contacts(NOT ACCESSIBLE TO ATHN)
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2. Nationally Accepted Approach
• HTCs to have secure access to health info necessary to deliver care for persons who are unable to get care from their regular HTC care provider.
– Standard, multilingual report
– Common consent
– Certified process for remote data access by treating HTC
– Network accessibility 24x7
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How Will Data Flow?
HTC
HTC
HTC
CentralServer:
Secure and Encrypted
Data
CentralServer:
Secure and Encrypted
Data
Non-identifiableConsented
Limited Dataset
Non-identifiableConsented
Limited Dataset
Patient
Patient
ConsentedPatients OnlyAccess by
Certificate Only
ATHNready
Care Management (virtual HTC safe deposit boxes
in a secure server vault)
Public Health & Research (includes ATHN)
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Security of Centralized Data Storage
• Centralized application services
– Uniform national privacy and security
– Uniform update process and IT support
• Patient identifiers
– Created by algorithm; up to nineteen variables
• CDC mid-tier server
– Fortified location, mirrored at two physical sites with two separate power grids
– Same level of protection as national biosecurity systems
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3. Acceptance of the Plan by HTCs
• Widespread use of a national Disaster Preparedness Plan by HTCs thereby minimizing patient morbidity and mortality attributable to an event.
– HTC provider “tool kit”
– HTC staff education about plan
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4. Patient Education & Involvement
• Patient comfort and the security of knowing what to do in case of a disaster to ensure that appropriate treatment can be received in a timely manner.
– National awareness campaign
– Transportable patient report from the HTC with core meaningful data
– Promote and facilitate integration ATHNready with NHF and other HTC disaster preparedness education and operational efforts
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How Will Consumers Benefit?
As Individuals
As A Legacy
• Electronic Core Data Follows the Patient• Available As Needed • Emergency Preparedness
• Help advance the science and practice of care for better outcomes• Preserves access to quality care by helping assess high cost but effective and necessary therapies
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Progress Report• Completed
– Launched Public Awareness Campaign– Core data defined– Disaster plan drafted– First renewal
• Ongoing – Report templates created and under review– Web Tracker integration, ongoing– ATHN Website Tools – HTC Locator– HTC pilot site selection and training, Fall, 2008– HTC toolkit supporting launch, Fall, 2008
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ATHNready Project Steering Committee
• ATHN President & CEO, Diane Aschman
• Director, National IT Support, Lew Parker
• Director, Community Relations, Kathleen Van Gorden
• HTC Medical Director & Katrina Victim, Cindy Leissinger
• ATHN Data Security Committee Liaison, Tami Wood-Lively
• ATHN Technology Committee Liaison,
• ATHN Community Relations Committee Liaison, Wanda Foster
• Consumer, Dale Gibbs
• NHF Representative, Jennifer Crawford
• CDC Representatives, Sally Crudder and Gretchen Simmons
with advice and input from
• ATHN Community Liaison Group