2008© COPYRIGHT ATHNready: Applying Lessons Learned to Ensure that Medical Information is Safe, Secure and Portable ATHN Data Summit July 31, 2008 Presenter: Tami Wood-Lively

2008© COPYRIGHT 2 Lessons Learned from Katrina: Harsh, High Profile Criticism Gets Results

2008© COPYRIGHT 3 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,

2008© COPYRIGHT 4 Recommendation : Electronic Records Lessons Learned “…HHS should strengthen the federal government’s capacity to provide public health and medical support during a crisis. This will require…development of deliberate plans, an additional investment in operational resources, and an accelerated initiative to foster widespread use of interoperable electronic health record systems.” Recommendations “foster widespread use of interoperable electronic health records…The adoption…will support first responders and health providers and dramatically improve the quality and efficiency of care to displaced patients across a population.”

2008© COPYRIGHT 5 Recommendation: Info Vault Lessons Learned “HHS should coordinate with…non-governmental organizations, to develop a robust, comprehensive, and integrated system to deliver human services during disasters…” Recommendation “HHS and DHS should…encourage the private sector to develop a capacity for individuals to voluntarily submit their personal identifying information for virtual storage that citizens and their families can access during emergencies…best thought of as a 21 st century version of a bank vault, with virtual safe deposit boxes for information... Because of the sensitivity of the personal data stored, strict privacy limitations and protections would be required.

2008© COPYRIGHT 6 Recommendation: Coordinate and Develop Disaster Preparedness Plans with Non-Government and Volunteer Organizations Lessons Learned “The federal response should better integrate the contributions of volunteers and non-governmental organizations into the broader national effort…prior to future incidents…and provide them with the necessary resource support for their involvement in a joint response.” Recommendation “ a. Improve communication of requirements from the incident site… e. Incorporate NGOs into the planning, training, and exercise process… f. Ensure there is a mechanism to coordinate spontaneous, unaffiliated volunteers.

2008© COPYRIGHT 7 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

2008© COPYRIGHT 8 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.

2008© COPYRIGHT 9 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

2008© COPYRIGHT 10 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?

2008© COPYRIGHT 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

2008© COPYRIGHT 12 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)

2008© COPYRIGHT 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

2008© COPYRIGHT 14 How Will Data Flow? HTC Central Server: Secure and Encrypted Data Central Server: Secure and Encrypted Data Non-identifiable Consented Limited Dataset Non-identifiable Consented Limited Dataset Patient Consented Patients Only Access by Certificate Only ATHNready Care Management (virtual HTC safe deposit boxes in a secure server vault) Public Health & Research (includes ATHN)

2008© COPYRIGHT 15 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

2008© COPYRIGHT 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

2008© COPYRIGHT 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

2008© COPYRIGHT 18 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

2008© COPYRIGHT 19 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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2008© COPYRIGHT 21 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