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WP5 Patient-Centred Multiscale Computational Workflows ICT 269978 Integrated Project of the 7th Framework Programme COOPERATION, THEME 3 Information & Communication Technologies ICT-2009.5.3, Virtual Physiological Human Work Package: WP5 Patient-Centred Multiscale Computational Workflows Deliverable: D5.1 Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 This page is intentionally blank Page 2 of 179 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 DOCUMENT INFORMATION IST Project Num FP7 – ICT - 269978 Acronym VPH-Share Full title Virtual Physiological Human: Sharing for Healthcare – A Research Environment Project URL http://www.vphshare.org EU Project officer Joël Bacquet Work package Number 5 Title Patient-Centred Multiscale Computational Workflows Deliverable Number 5.1 Title Patient Avatar Defined for Flagship Workflows Date of delivery Contractual 30-Nov-11 Actual 30-Nov-11 Status Version 1.2 Final Nature Prototype Report Dissemination Other Dissemination Public (PU) Restricted to other Programme Participants (PP) Level Consortium (CO) Restricted to specified group (RE) Authors (Partner) Susheel Varma (USFD), Enrico Schileo (IOR), Maria-Cruz Villa (UPF), Pablo Lamata (KCL), Breanndan Ó Nualláin (UvA) Responsible Rod Hose Email [email protected] Author Partner USFD Phone +44 114 271 2313 Abstract (for This report considers patient-centred multiscale computational workflows and the dissemination) digital patient avatar concept in particular. It begins with a useful overview of electronic care/health record technologies and outlines the implications for the patient avatar in VPH-Share. Four flagship workflows are then described, each providing details of the processing steps and involved. A survey of the clinical data required and the specific clinical data required by each step is detailed. A patient Avatar is then defined for each workflow. Keywords Patient avatar, electronic health records, scientific workflow, workflow information model The information in this document is provided as is and no guarantee or warranty is given that the information is fit for any particular purpose. The user thereof uses the information at its sole risk and liability. Its owner is not liable for damages resulting from the use of erroneous or incomplete confidential information. Page 3 of 179 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 Version Log Issue Date Version Author Change 16-Nov-11 0v6 Susheel Varma Draft report delivered for internal review 23-Nov-11 0v8 Susheel Varma Internal review comments and compiled patient avatars incorporated 30-Nov-11 1v0 Susheel Varma Final proof read before publication 30-Nov-11 1v1 PMO Proof read 30-Nov-11 1v2 PMO Submission version Page 4 of 179 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 Contents EXECUTIVE SUMMARY 7 1 INTRODUCTION 9 2 BACKGROUND 11 3 ELECTRONIC HEALTH RECORD STANDARDS 13 4 PATIENT AVATARS 24 5 WORKFLOW INFORMATION MODELS 32 6 DISCUSSION & OUTSTANDING CHALLENGES 75 7 CONCLUSIONS 76 8 REFERENCES 77 LIST OF KEY WORDS/ABBREVIATIONS 81 ANNEX 1: @NEURIST WORKFLOW SERVICES 83 ANNEX 2: @NEURIST WORKFLOW SCHEMATIC DIAGRAM 85 ANNEX 3: VIROLAB LISTINGS 86 ANNEX 4: @NEURIST COMMON REFERENCE INFORMATION MODEL 89 ANNEX 5: @NEURIST PATIENT AVATAR 90 ANNEX 6: EUHEART PATIENT AVATAR 111 ANNEX 7: VIROLAB PATIENT AVATAR 141 ANNEX 8: VPHOP PATIENT AVATAR 157 Page 5 of 179 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 LIST OF FIGURES Figure 1: Pre-Electronic Health Records [5] ........................................................................... 13 Figure 2: Electronic Health Record [5] .................................................................................... 14 Figure 3: Generic Model: relationship between care cycle phase and disease course [8] ....... 15 Figure 4: Dual Model Approach: Blood Pressure Example .................................................... 17 Figure 5: Archetype Design Process and Repository [12] ....................................................... 18 Figure 6: Archetype Dissemination [12].................................................................................. 20 Figure 7: Computational Biomechanics Workflow: Patient to Risk Assessment [15] ............ 26 Figure 8: The Problem of Standard Proliferation [16] ............................................................. 28 Figure 9: Patient Avatar Interoperability ................................................................................. 29 Figure 10: Schematic Relationship Between HER Standards [17] .......................................... 29 Figure 11: Complex information processing workflow (@neurIST example) ........................ 32 Figure 12: Overview of the Pressure Estimation Workflow .................................................... 48 Figure 13: Velomap Tool, showing selected processing options [38] ..................................... 50 Figure 14: Spatio-temporal map of pressure differences ......................................................... 53 Figure 15: Twilight visualisation tool showing clusters of HIV patients ................................ 58 Figure 16: Simplified VPHOP workflow (Clinical Perspective) ............................................. 65 Figure 17: Simplified VPHOP workflow (modelling perspective) ......................................... 66 Figure 18: VPHOP workflow (architectural prespective) ....................................................... 68 LIST OF TABLES Table 1: Archetype Design Patterns ........................................................................................ 19 Table 2: Data resources available to VPH-Share (subject to licence and governance) ........... 28 Page 6 of 179 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 EXECUTIVE SUMMARY This report considers patient-centred multiscale computational workflows, the significance of the digital patient avatar concept, and the possible implementation of such an avatar in the exemplar workflows within the VPH-Share project. Having established the background to the concept, the report continues with an overview of the various electronic care/health record (EHR) technologies and their core components. It also examines the standards that exist in the domain, their relationship to the requirements for a patient avatar, and the degree to which the two concepts are, or may become, intertwined. It then examines the evolving avatar concept itself, the ethical and legal constraints that should be considered, and the role for such data constructs within simulation workflows. The four VPH-Share exemplar workflows are then described in detail, in each case examining the processing steps involved, the clinical and other data items that contribute to the workflow’s operation, and the consequences for implementation of a workflow-specific avatar to support the process. For each workflow, mechanisms for missing-data replacement are considered and specific ethical and legal issues are discussed. Finally the report considers the general status of the avatar concept within medical simulations, and the remaining challenges that have been identified. In a series of significant and comprehensive annexes, the various aspects of workflow operation are illustrated, followed by a full avatar description for each exemplar workflow, presented within a structured hierarchical data construct. Page 7 of 179 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 This page is intentionally blank Page 8 of 179 FP7 – ICT – 269978, VPH-Share WP5: Patient-Centred Multiscale Computational Workflows D5.1: Patient Avatar Defined for Flagship Workflows Version: 1.2 Date: 30-Nov-11 1 INTRODUCTION “We are only now beginning to acquire reliable material for welding together the sum total of all that is known into a whole; but on the other hand it has become next to impossible for a single mind to command more than a small specialised portion of it.” ~ Erwin Schrödinger – What is Life? (1944) The acquisition of quantitative and high quality biological data over the last six decades has continued and Schrödinger’s insight still remains salient today. The first high-resolution mapping of the human anatomy performed by The Visible Human Project1 and the relentless advancement of computational and numerical techniques used across the VPH (Virtual Physiological Human) community and beyond, to educate and inform science stands further testament to Schrödinger’s vision. VPH-Share is building an infostructure to facilitate the construction and management of VPH workflows, with focus on the three primary elements of such workflows, i.e. models, tools and data. The target user of this infostructure is the VPH researcher. The process is exemplified by four flagship workflows
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