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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