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An Introduction to The National Pediatric Acquired Brain Injury Plan (PABI Plan) and implementing the Wyoming State PABI Plan May 22, 2013.

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Presentation on theme: "An Introduction to The National Pediatric Acquired Brain Injury Plan (PABI Plan) and implementing the Wyoming State PABI Plan May 22, 2013."— Presentation transcript:

1 An Introduction to The National Pediatric Acquired Brain Injury Plan (PABI Plan) and implementing the Wyoming State PABI Plan May 22, 2013

2 Participants and Agenda Participants: Patrick Donohue, Esq., Founder, The Sarah Jane Brain Foundation Dr. Ron Savage, President, The Sarah Jane Brain Foundation Dawn Lacko, State Lead Director for Wyoming PABI Plan; Interim Executive Director, Brain Injury Alliance of Wyoming Agenda: Welcome and introduction Launch of The Sarah Jane Brain Project Overview of PABI Plan Overview of Architecture of The Virtual Center Overview of the Education/Training Portal with The Virtual Center Overview of Wyoming PABI Plan and next steps Closing remarks 2

3 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 3

4 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 4

5 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 5

6 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 6

7 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 7

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9 Brain Injury Traumatic Brain Injury Closed Head Injury Open Head Injury Non-traumatic Brain Injury Congenital Brain Injury Pre-birthDuring birth Acquired Brain Injury After birth /during childhood Savage,

10 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. 10

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12 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 12

13 Each STATE will staff  Center Rep  Basic Science  Education  Training  Prevention  Case Management  Registry Each STATE will staff  Center Rep  Basic Science  Education  Training  Prevention  Case Management  Registry 7 Regional Centers Each REGION hosts 1 National Center and each STATE within the region has a Representative to one of the National Centers  Prevention  Acute  Reintegration  Adult Transition  Mild TBI  Rural  Virtual Center 7 Regional Centers Each REGION hosts 1 National Center and each STATE within the region has a Representative to one of the National Centers  Prevention  Acute  Reintegration  Adult Transition  Mild TBI  Rural  Virtual Center 13

14 Phase IV: Implementing The National PABI Plan Announced 52 State Lead Centers of Excellence – June 5, 2009 – Sarah Jane’s 4 th birthday present – one in every state plus D.C. and Puerto Rico – Largest collaboration in U.S. history for PABI 14

15 Phase IV – Continued $930 Million PABI Plan Grant Proposal H. Con. Res. 198 H.R

16 H. R – 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 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 16

17 Seven Categories of Care Prevention Acute Care Reintegration / Long-term Care Adult Transition “Mild” TBI Rural / Tele-health The Virtual Center of Excellence 17

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19 1. Category of Care: Prevention “Prevention is the best possible treatment for any brain injury and is the only cure!” 19

20 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). 20

21 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 21

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23 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…

24 Acute Care 24

25 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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27 3. Category of Care: Reintegration and Long-term Care Schools, families and communities are the real long- term providers of services… not hospitals 27

28 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. 28

29 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.,

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31 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. 31

32 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. 32

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35 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 35

36 36 National Pediatric Trauma Registry Mechanism of Injury for mTBI (B-19 years)N = 8016

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38 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 38

39 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 39

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41 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? 41

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43 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? 43

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45 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 45

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47 PABI Plan Virtual Center Architecture 47

48 SJBF Virtual Center Design © 2012 Oracle Corporation – Proprietary and Confidential Source: SJBF PABI Plan 48

49 Oracle Tech HIE HIM TRC -- EHA OLX Analytic Apps Oracle Database Oracle Biz Intelligence Oracle Data Integrator Clinical Systems HL7 Message Source Research Systems ETL Oracle SOA Services / MDM IHE XDS Source Oracle HSIE Cohort Explorer OLX Diary OLX Report OHTB OHMPI Record Locator Policy Monitor Policy Engine Oracle HSIG Oracle Healthcare Analytics Data Integration Oracle Healthcare Data Model Data Marts Data Cubes Omics Data Loaders Omics Databank Cohort Data-mart OLX Data Model ETL CCD Native HL7 PA/TBI Virtual Center Logical Architecture Oracle RightNow Clinicians/ Researchers Patients/Care Givers/Physicians/Case Managers 49

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51 PABI Plan Virtual Center Education Overview 51

52 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 Physicians 2.6M Physician Visits Per Month 300K+ “mobile” physicians 52

53 Clinical Advances in PABI Board 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 53

54 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 54

55 State Lead Center for Wyoming  Brain Injury Alliance of Wyoming  Dawn Lacko is the Director of the State Lead Center for Wyoming Interim Director 55

56 HR2600 Seven-year budget for Wyoming Year 1: $4,770,255 Year 2: $8,547,128 Year 3: $8,547,128 Year 4: $6,837,702 Year 5: $5,128,277 Year 6: $3,418,851 Year 7: $1,709,426 Total: $38,958,767 Number of Jobs created: 83 56

57 Wyoming Case Management System  Level 1 Case Management Centers Casper  Level 2 Case Management Centers Cheyenne, Gillette  Level 3 Case Management Centers Green River, Cody 57

58 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 58

59 Next Steps  Develop Steering Committee for Wyoming Across the continuum of care Across the entire state  Statewide Planning Meeting: TBD 59

60 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 60

61 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 61

62 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. 62

63 Follow Up and Thank You  Additional Questions Ted Molloy at or  Join Wyoming Steering Committee Contact: Dawn Lacko


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