An Introduction to The National Pediatric Acquired Brain Injury Plan (PABI Plan) and implementing the

Wyoming State PABI Plan

May 22, 2013

Participants and AgendaParticipants:Patrick Donohue, Esq., Founder, The Sarah Jane Brain FoundationDr. Ron Savage, President, The Sarah Jane Brain FoundationDawn Lacko, State Lead Director for Wyoming PABI Plan; Interim Executive Director,

Brain Injury Alliance of Wyoming

Agenda:Welcome and introductionLaunch of The Sarah Jane Brain ProjectOverview of PABI PlanOverview of Architecture of The Virtual CenterOverview of the Education/Training Portal with The Virtual CenterOverview of Wyoming PABI Plan and next stepsClosing remarks

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Launch of The Sarah Jane Brain Project

• Sarah Jane’s story

• Research about PABI

• Phase 1: Open Source Initiative

• Phase 2: Recruit families and Advisory Board

• Phase 3: Development of PABI Plan

• Phase 4: Implement PABI Plan

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Sarah Jane’s Story

• Born healthy on June 5, 2005

• Violently shaken by baby nurse when she was only 5 days old, breaking four ribs, both collarbones and causing a severe brain injury (lost about 60% of rear cortex)

• Cannot walk on her own, speak words and has had seizure disorder

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Research About PABI

• Autism = About 24,000 new cases a year (federal government moving towards $1 Billion a year in research)

• HIV/AIDS = About 56,000 new cases a year (federal government spends over $4 Billion a year in research)

• PABI = Leading cause of death and disability for American youth from birth to 25 years of age– >765,000 ED visits annually

– >80,000 Hospitalizations annually

– >11,000 Deaths annually

• Federal research budget for PABI < $10 Million annually

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Phase I: Open Source Initiative

• Open source principles, i.e., shared-knowledge

• All of Sarah Jane’s medical records online

• October 2007: Launch Phase I of The Sarah Jane Brain Project

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Phase II

• Recruit other families who have a child with a brain injury to participate in our Open Source Initiative

• Establish Advisory Board of leading experts

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Brain Injury

Traumatic Brain Injury

Closed Head Injury Open Head Injury

Non-traumatic Brain Injury

Congenital Brain InjuryPre-birth

During birth

Acquired Brain InjuryAfter birth /during childhood

Savage, 1991

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Phase III: National Advisory Board develops National PABI Plan

• Over 75 Leading experts gathered in New York City in January 2009 to finalize the PABI Plan

• A seamless, standardized evidence-based system of care universally accessible for all PABI families regardless of where they live in the U.S.

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State Lead Centers of Excellence:Primary Responsibilities

• Disseminate via A State Master Plan

– Collaborate

• Within state

• Among other State Lead Centers

– Teach, Train, and Track

• Public awareness

• Train involved citizens

• Track long term needs of victims

• Case Management System

• Regional / National Leadership around one of the Seven Categories of Care

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Each STATE will staffCenter RepBasic ScienceEducationTrainingPreventionCase ManagementRegistry

Each STATE will staffCenter RepBasic ScienceEducationTrainingPreventionCase ManagementRegistry

7 Regional CentersEach REGION hosts 1 National Center and each STATE within the region has a Representative to one of the National CentersPreventionAcuteReintegrationAdult TransitionMild TBIRuralVirtual Center

7 Regional CentersEach REGION hosts 1 National Center and each STATE within the region has a Representative to one of the National CentersPreventionAcuteReintegrationAdult TransitionMild TBIRuralVirtual Center

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Phase IV: Implementing The National PABI Plan

• Announced 52 State Lead Centers of Excellence

– June 5, 2009 – Sarah Jane’s 4th birthday present

– one in every state plus D.C. and Puerto Rico

– Largest collaboration in U.S. history for PABI

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Phase IV – Continued

•$930 Million PABI Plan Grant Proposal

• H. Con. Res. 198

• H.R. 2600

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H. R. 2600 – The PABI Plan Act

• $2.9 Billion, seven-year initiative to implement the National Pediatric Acquired Brain Injury Plan (PABI Plan)

• Has broad-based, bi-partisan support

• H.R. 2600 was introduced by Rep. Leonard Lance (R-NJ) on July 20, 2011

• Introduced with 50 Original Sponsors and now has over 145 co-sponsors

– The Most Conservative Member (Pence – IN) and The Most Liberal Member (Baldwin – WI)

– Seven GOP Committee Chairmen and Seven Ranking Democrats

– Over a dozen Tea Party Freshmen

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Seven Categories of Care• Prevention

• Acute Care

• Reintegration / Long-term Care

• Adult Transition

• “Mild” TBI

• Rural / Tele-health

• The Virtual Center of Excellence

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1. Category of Care: Prevention

“Prevention is the best possible treatment for any brain injury and

is the only cure!”

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Current PABI Prevention efforts are modeled on the World Health Organization

• Primary prevention entails preventing new injuries through Education and Encouragement to reduce high risk behaviors, Engineering safer technologies, Enforcement of safe practices, and Evaluation of the impact of these measures (5Es).

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Beyond Primary Prevention

• Secondary prevention involves reducing the severity of injuries, through improved medical practices.

• Tertiary prevention involves decreasing the frequency and severity of disability after an injury, via improved support structures in the post-acute setting

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2. Category of Care: Acute / Rehab Care

The Golden Hour / The Platinum Half Hour During this early period when minutes really count in terms of assessing injury severity, instituting effective neurosurgical and neuro-critical care interventions and protecting the brain against any secondary injuries

What happens here affects everything that follows…

Acute Care

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Inpatient Rehabilitation

•Access to comprehensive, inpatient rehabilitation and length of stay

•Coordinated discharge planning with home, school, community

•Access to other support services: neuropsychology, OT, PT, SLP, etc.

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3. Category of Care: Reintegration and Long-term Care

Schools, families and communities are the real long-term providers of services… not hospitals

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Category of Care: Reintegration and Long-term Care

There is no systematic method for connecting children and their families with services within the school and community following TBI.

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Under-identification for Special Education

• Annually: 62,000 children hospitalized for TBI

• Annually: Approximately 19% needing special education supports

• Cumulative total (K-12): 144,751*

• Total on federal Sp. Ed. census (2005): 23,509 (ideadata.org)

Zaloshnja et al., 2008

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4. Category of Care: Adult Transition (16-25 years of age)

• PT, OT, Speech services received through special education end at age 21.

• IEP Transition Plans support the transition from school to post-secondary education or work, but not independent living, community safety, and adult relationships.

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Transition to Adult Life following Childhood ABI: Current Problems

• Lack of and/or access to knowledgeable adult medical providers and specialists

• Lack of and/or access to knowledgeable psychologists, psychiatrists, and community mental health providers

• Lack of insurance coverage for ongoing, post-acute PT, OT, SLP, cognitive rehabilitation or other psychological treatments

• Lack of and/or access to opportunities for positive peer relationships, social interactions, community integration

• Lack of and/or access to these services negatively impacts all facets of one’s Quality of Life.

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5. Category of Care: “mild” TBI

• The overwhelming majority of TBI’s are classified as “mild.” (75-90%), i.e., mTBI

• “Mild” is a medical term (GCS) and not necessarily indicative of ongoing residual deficits and problems

• A Concussion is a Brain Injury (“ding” / “bell rung”)

• Concussions (sports/recreation) must be better measured, monitored and managed

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0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

National Pediatric Trauma Registry

Mechanism of Injury for mTBI (B-19 years) N = 8016

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6. Category of Care: Rural TeleHealth

• 17% of American children under the age of 18 live in rural areas (USDA, 2000)

• The proportion of rural children relative to urban children increased by 3% (1990 to 2000)

• 44% of American children live more than 200 miles from either a Children’s hospital (NACHRI) or a hospital with neurologic emergency care (this includes adult specialists)

• Even when emergent care is available, needed follow up care and rehabilitation would require an ≈ 4 hour commute.

Geographic distribution of youth (under age 18) relative to major city location

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Rural TeleHealth

• ≈42% of Americans live in cities with less than 200,000 persons (Census 2000, US Population Living in Urban vs. Rural Areas)

• Rural hospitals, without specialty staffing for neurologic emergencies (≈80% of rural hospitals), provide care for 54 million US Citizens (American Hospital Association)

• On average, a Veteran will commute ≈ 8 hours to a VA facility for healthcare

Cities with populations of at least 750,000

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Building Bridges with Super Glue

• How do we make sure that all Treatment Categories are linked together and we eliminate the ‘cracks” between systems and services?

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7. Creating a Virtual Center of Excellence for Research and Education

How do we wrap research and education around our Categories of Care for children, adolescents and

young adults with brain injuries?

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The SJBF Virtual Center• Promotes Research

and Education• Advances discovery

speed to application• Empowers patients &

reaches community• Provides anonymous

& highly linked care • Integrates data to

inform public policy

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PABI Plan Virtual

Center Architecture

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SJBF Virtual Center Design

© 2012 Oracle Corporation – Proprietary and Confidential

Source: SJBF PABI Plan48

AnalyticApps

Oracle Database Oracle BizIntelligenceOracle Data Integrator

Clinical Systems

HL7 MessageSource

ResearchSystems

ETL

Oracle SOA Services / MDM

IHE XDSSource

CohortExplorer

OLX Diary

OLX Report

OHTB

OHMPI

RecordLocator

PolicyMonitor

PolicyEngine

Oracle Healthcare Analytics Data Integration

Oracle Healthcare Data Model

Data MartsData Cubes

Omics DataLoaders

OmicsDatabank

CohortData-mart

OLX DataModel

ETL

CCD

Native HL7

PA/TBI Virtual CenterLogical Architecture

Oracle RightNow

Clinicians/ Researchers

Patients/Care Givers/Physicians/Case Managers

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PABI Plan Virtual CenterEducation Overview

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WebMD Engages the Largest Audience of Patients and Health Care Professionals

106M Unique Visitors Per Month

1 in every 2 Adults

3 in every 4 Women

95% of All Adults Seeking Health Information Online

500K+ Active US Physicians2.6M Physician Visits Per Month

WebMD Professional Specialty GroupActive Reach

Avg. Monthly Visits

Critical Care Specialists 3,238 17,971 Neurologists & Neurosurgeons 15,517 93,893 Pediatricians 40,704 235,382 Primary Care Physician 147,286 951,919 Psychiatrists 32,648 181,703 Public Health & Preventive Medicine Specialists 4,443 22,446 Surgeons 28,954 156,406

300K+ “mobile” physicians

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Clinical Advances in PABIBoard Certification in

Brain Injury Neuro-Rehabilitation Training

PABI Clinical Patient Waiting Room

CME-TV

PI-CME

Personalized “Tailored” Learning

Town Halls

PABI Plan Virtual Center:Medscape Education Strategy

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Other PABI Considerations

• Integrative Medicine: treatment, services & supports

– Nutrition / Recreation– Movement (Yoga, Tai Chi, Orthopedics)– Creative Arts (music, art, dance)– Cognitive activities (games, puzzles, computer

activities)– Pain management

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State Lead Center for Wyoming Brain Injury Alliance of Wyoming Dawn Lacko is the Director of the State Lead Center for Wyoming

• Interim Director

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HR2600 Seven-year budget for Wyoming

Year 1: $4,770,255Year 2: $8,547,128Year 3: $8,547,128Year 4: $6,837,702Year 5: $5,128,277Year 6: $3,418,851Year 7: $1,709,426Total: $38,958,767Number of Jobs created: 83

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Wyoming Case Management System

Level 1 Case Management CentersCasper

Level 2 Case Management CentersCheyenne, Gillette

Level 3 Case Management CentersGreen River, Cody

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Regional Responsibility

Category of Care: Prevention Rocky Mountain Region includes:

Colorado, Idaho, Montana, Nebraska, South Dakota, North Dakota, Utah, Wyoming

Develop and monitor data collected regionally Develop and standardize Education and Training regionally Monitor and encourage Scientific Research regionally

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Next Steps

Develop Steering Committee for Wyoming• Across the continuum of care

• Across the entire state

Statewide Planning Meeting: TBD

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Breakout Sessions for Statewide Meeting

• Breakout session 1: Review the goals, objectives and implementation strategies for the Wyoming State PABI Plan’s major Categories of Care and how Rural/Telehealth plays a significant role across each Category– Prevention– Acute Care – Reintegration– Adult Transition– Prevention, Identification and Treatment of “Mild”

TBI/Concussions

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Breakout Sessions for Statewide Meeting

• Breakout session 2: Develop a good understanding of how the Virtual Center will serve as the research data collection/analysis (Oracle) and for education/training of consumers and professionals (WebMD/Medscape)– Prevention– Acute Care – Reintegration– Adult Transition– “Mild” TBI/Concussions

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Breakout Sessions for Statewide Meeting

• Breakout session 3: will allow each group to present their findings and allow for the discussion of next steps, i.e.: follow-up meetings with Co-Chairs, identification of other stakeholders, identifying resources and materials, identifying implementation strategies, etc.

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Follow Up and Thank You

Additional Questions

• Email Ted Molloy at ted@thebrainproject.org or 212-576-1180

Join Wyoming Steering Committee

• Contact: Dawn Lacko

• 307-473-1767

• director@projectbrainofwy.com

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