One Mind Portal 2.0 Update V 1.8Stephen Larson, Chief Information Officer,One Mind for Research                           ...
Challenge• Economic burden of brain disease (US):   • $900 billion / yr (PWC)• Investments in medical research (US):   • $...
ChallengeInformation that is critical to moreefficient medical research arefrequently still locked inside silos:   • Patie...
PTSD, Depression & TBI Network                   One Mind has identified numerous alliance partners committed to accelerat...
PTSD-TBI Ecosystem Vision                       The working group developed this vision for a technology-enabled data shar...
Integrating Research By Connecting People Online                   Patients                   One Mind                Port...
Our solution            Engagement            Marketplace  Data           Data          Dataingestion      warehouse      ...
Data ingestion                 8
Data ingestion                 9
Neuroscience Information Framework                     and Portal 2.0                                       Engagement    ...
tranSMART case study                       11
Facilitating International CollaborationsDr. Geoff Manley                                         Dr. Andrew MaasTRACK-TBI...
Case Study – Dr. Geoff Manley @                     UCSF                                Chief of Neurosurgery at San Fran...
TRACK-TBI Study                                TRACK-TBI included 602 subjects with                                 a his...
Case Study – Dr. Geoff Manley @                     UCSF        Key questions:           Can tranSMART augment or accele...
TRACK-TBI Case Study                                                 One Mind team                                        ...
Case Study update                  tranSMART                  instance loaded on                  AWS                  TRA...
Next steps• TBI Knowledge network supports international collaborations   – Built first around tranSMART   – tranSMART use...
Contributions• Introduced the challenge One Mind for    Research is working to overcome•   Introduced the concept of the O...
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S.Larson one mind for research -building public-private partnerships in brain research via tran-smart

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S.Larson one mind for research -building public-private partnerships in brain research via tran-smart

  1. 1. One Mind Portal 2.0 Update V 1.8Stephen Larson, Chief Information Officer,One Mind for Research 1
  2. 2. Challenge• Economic burden of brain disease (US): • $900 billion / yr (PWC)• Investments in medical research (US): • $94 billion in 2003 (JAMA)• 10x hurdle of efficiency 2
  3. 3. ChallengeInformation that is critical to moreefficient medical research arefrequently still locked inside silos: • Patients • Clinicians • Researchers in academia & industry • Patient advocates • Technology developers 3
  4. 4. PTSD, Depression & TBI Network One Mind has identified numerous alliance partners committed to accelerating knowledge and cures and strong networks are being established Within the PTSD-TBI Network alone, this is a sample of governmental agencies, organizations and industry partners who have contributed: • Funding and human resources • Informatics and IT • Data sets • Patient and HCP Advocacy support Platform Capability Partners Disease Expert, Data & Analytics Partners© 2012 One Mind For Research 16
  5. 5. PTSD-TBI Ecosystem Vision The working group developed this vision for a technology-enabled data sharing community focused on the Citizen and united through a federated data platform Incentives Community members play dual roles of data providers and data Citizens are users throughout the cycle Citizens empowered and engaged through 1 Citizens give consent to use education their patient data, and maintain ownership and control of PHR and EHR data via web portal. 3 1 Data is collected and shared continuously in federated data 2 Researchers and data scientists use patient data to Federated platform by all community members conduct analysis and build Data via “Honest Broker” models. Findings reported on Platform system the platform for community use. Clinicians & Care Researchers Standards for data Givers 3 Clinicians develop improved curation, rules for diagnoses, preventions and access, and common classification system treatments based on research set by One Mind results to deliver better care to 2 consortium patients. Results reported on platform for community and care giver use. Underlying system of incentives drives community engagement and participation Foundation of Common Data Governance, Privacy, Legal and Ethical Principles 5© 2012 One Mind For Research
  6. 6. Integrating Research By Connecting People Online Patients One Mind Portal: CreatingResearchers common Clinicians ground to build a culture of shared understanding of disease Tech Advocates Partners 6
  7. 7. Our solution Engagement Marketplace Data Data Dataingestion warehouse analysis 7
  8. 8. Data ingestion 8
  9. 9. Data ingestion 9
  10. 10. Neuroscience Information Framework and Portal 2.0 Engagement Marketplace Data Data Data ingestion warehouse analysis Tiered UserSearch resource Web Encyclo- accountEngine ingestion services pedia system pipeline 10
  11. 11. tranSMART case study 11
  12. 12. Facilitating International CollaborationsDr. Geoff Manley Dr. Andrew MaasTRACK-TBI 1 -> IMPACT -> CenterTRACK-TBI 2 TBI / INTBIR NINDS, FITBIR, INCF NIF 12
  13. 13. Case Study – Dr. Geoff Manley @ UCSF  Chief of Neurosurgery at San Francisco General Hospital  Professor of Neurosurgery at the University of California San Francisco (UCSF).  He is a trauma neurosurgeon with clinical interests in brain injury, spinal cord injury and neurocritical critical care.  His translational research interests span from the laboratory to the bedside. 13© 2012 One Mind For Research
  14. 14. TRACK-TBI Study  TRACK-TBI included 602 subjects with a history of TBI who presented acutely to emergency departments in 3 states and 50 subjects who presented late to a rehab facility. The majority of these patients were classified as mild TBI.  Goals: – Prospectively validate the recently developed TBI Common Data Elements. – Collect a highly granular data set that includes phenotypic, imaging, genomic, proteomic and multidimensional outcome data. 14© 2012 One Mind For Research
  15. 15. Case Study – Dr. Geoff Manley @ UCSF  Key questions:  Can tranSMART augment or accelerate data analysis of TRACK-TBI data?  What are the most desirable analytics to perform on the TRACK-TBI data via tranSMART?  What use cases beyond what tranSMART provides would aid analysis of TRACK-TBI data?  What technologies can we bring to bear from One Mind partners to address additional use cases? 15© 2012 One Mind For Research
  16. 16. TRACK-TBI Case Study One Mind team learning, reporting Data Case Study Analysis loading of tranSMART work TRACK- cloud TBI instance (Thomson Geoff’s team Reuters) (UCSF, others) 16© 2012 One Mind For Research
  17. 17. Case Study update tranSMART instance loaded on AWS TRACK-TBI data set loaded! Initial analyses run Broadening to more collaborators Focus on deeper analyses 17© 2012 One Mind For Research
  18. 18. Next steps• TBI Knowledge network supports international collaborations – Built first around tranSMART – tranSMART users become initial Portal users – tranSMART becomes an application within the broader context of the One Mind Portal• Produce detailed analysis of TRACK-TBI 1 data in tranSMART• Support efforts to make open source tranSMART more pluggable – REST-based web services layer – Single sign-on• Continue to align data standards and data collection globally 18
  19. 19. Contributions• Introduced the challenge One Mind for Research is working to overcome• Introduced the concept of the One Mind Portal• Introduced Dr. Manley and the TRACK-TBI study• Reported on progress with the TRACK-TBI case study around tranSMART• Pointed towards future steps with tranSMART and the One Mind Portal 19

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