ATHN Data Summit July 31, 2008 Presenter: Tami Wood-Lively

1. ATHNready: Applying Lessons Learnedto Ensure that Medical Information is Safe, Secure and Portable ATHN Data Summit July 31, 2008 Presenter: Tami Wood-Lively

2. Lessons Learned from Katrina: Harsh, High Profile Criticism Gets Results

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, http://whitehouse.gov/reports/katrina-lessons-learned.pdf

4. 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

5. ATHNready: Aligned With HHS Priorities • Promote quality and efficient delivery of care throughthe use ofhealth 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.

6. ATHN’s Strategic Opportunities • 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 Data Management Data safety, back-up, and portability

7. 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?

8. 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

9. 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)

10. 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

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

12. 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

13. 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

14. 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

15. How Will Consumers Benefit? As Individuals • 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 As A Legacy

16. 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

18. 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