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Medinfo2017 Trillium II Workshop

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During the workshop, the Trillium II project was presented to the audience as well as the state of patient summaries in Denmark and the US. Furthermore, the results of a survey on use of patient summaries in disaster and relief situations were presented.

The purpose of the workshop was to promote the project and the Global Community for Digital Health Innovation and collect feedback on the participants’ attitude towards patient summaries.

The workshop participants were invited to discuss which patient summary use cases they considered most relevant for the Trillium II project to focus on and how an international patient summary should be governed.

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Medinfo2017 Trillium II Workshop

  1. 1. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium II This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745
  2. 2. Standards Organizations: Health Systems and Associated Competence centers: Dissemination and Networking: Development and Evaluation: Third parties
  3. 3. support advance enhance improve
  4. 4. vaccinations medications encounters Identification allergies Implantable devices Health team Security preferences problems
  5. 5. right and enabler of safe care. stakeholder groups to identify needs key enablers and success educational and training material
  6. 6. • Quality assurance • Health goals • Early warnings Can we use patient summaries to unlock patient data?
  7. 7. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium II This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745
  8. 8. 10 HL7 Foundation: who we are.. HL7 the best and most widely- used eHealth standards since 1986 HL7 v2 Clinical Document Architecture CIMI HL7 FHIR 19 National Affiliates in Europe (~38 wordwide) European HL7 foundation established in 2010 European Funded Research Projects Annual HL7 in Europe Newsletter Website: www.HL7.eu eHealth policy & Research SDO Joint Initiative Council HL7 Vision: A world in which everyone can securely access & use the right health data when & where they need it. August 24, 2017 Hangzhou, China Building a global community for digital health innovation: the role of patient summaries
  9. 9. The Use Case: what if you need care abroad? • When patient needs unplanned care in another country, a EHR summary fit for the purpose of safe and efficient health care is available. • After the health care encounter, patient receives encounter report in a format and language that can be understood back home. • Addressed by European Union funded projects in cases of unplanned or emergency care - among European member states by epSOS (2008-2011) and eHDSI (2017-2020) - In the transatlantic setting by the Trillium Bridge project (www.trilliumbridge.eu) - Globally by the International patient summary implementation guide.
  10. 10. European Patient Summary Guidelines, Nov 2013, rev 2016 Country of origin Country of treatment Clinical Records in the Country of treatment Contact Point for Patient Summaries In Country of Treatment Translated/ Transcoded EU Patient Summary Terminology Services Clinical Records in the country of Origin EU Patient Summary Contact Point for Patient Summaries In Country of Origin Patient seeks unplanned care where another language is spoken.
  11. 11. EU Patient Summary Guideline EU patient summary guideline defines patient summary as the “minimum set of information needed to assure healthcare coordination and continuity of care” • Emergency or unplanned care refers to “the range of healthcare services available to people who need medical advice, diagnosis and/or treatment quickly and unexpectedly” • Types of EHR summaries • Emergency data set • Continuity of care record • Encounter report • Discharge summary • 2nd opinion • Clinical patient summary • Disease specific summaries • Around the world many variants of the same basic types of patient summaries • HL7 Consolidated CDA • seven document types, seven of which were consolidated in CCDA
  12. 12. Results of Trillium Bridge 2013-2015 • Gap Analysis • Compared patient summary specifications in EU/US • Shared clinical elements: problems, medications, allergies • Interoperability Assets • Established a terminology prototype CTS-2 service: http://extension.phast.fr/STS_UI • Developed Patient summaries Transformer: http://informatics.mayo.edu/trillium- bridge • Identified Gaps in IHE profiles Patient Identity & Document Query/Retrieve • Validation activities: 4 EU countries/ Kaiser Permanente • EU/US Marketplace; HIMSS 2015; IHE Connectathon 2015, eHealthWeek Recommendation: “Advance an International Patient Summary (IPS) standard to enable people to access and share their health information for emergency or unplanned care anywhere and as needed. At minimum the IPS should include immunizations, allergies, medications, clinical problems, past operations and implants.”
  13. 13. Comparison of EHR summaries and the International Patient Summary bottom line Allergies Medications Problems Pregnancy History Expected date of delivery Vaccinations Social History Medical Devices Vital Signs Blood group ProceduresAllergies Problems Immunizations Procedures (surgical ) Functional Status (autonomy / invalidity) Results (blood group ) Social History Observations (lifestyle history ) Vital signs (blood pressure ) Medications Pregnancy history (expected date of delivery ) Advance Directives Encounters Family History Payers CCDPS Plan of Care (therapeutic recommendations )Medical Devices and Implants • Same base Standard (HL7 CDA) • Different philosophy: capture vs continuity of care • Different IGs: C-CDA/CCD (US realm) vs epSOS IG • Different technical approach: Open vs Closed Template
  14. 14. Transforme r (CTS2) Trillium Bridge Provider-Mediated Exchange Examples of most significant issues with specification alignment • Certificates: Self signed for purposes of demonstration • SAML: Differences in the requirements for eHealth versus epSOS implementation • Patient Discovery: Demographics versus identifier based search • Document Query: Difference in Class Code for Document Type used • Document Retrieve: Country specific identifier is used to retrieve for epSOS IHE XCPD IHE XCA IHE ATNA (epSOS) IHE XCPD IHE XCA IHE ATNA (eHealth) Trillium Bridge Gateway (epSOS Open NCP) National Contact Point
  15. 15. The main question for Trillium Bridge.. • Can we convert a patient summary generated in the European Union according to the EU Patient Summary Guideline to one useful in the USA? • Our Action: Compared clinically, syntactically and semantically the European PS (epSOS) and MU clinical summary (HL7 CCDA/CCD) • Evidence: use specs & examples, carry out tests • Two use cases: - Provider mediated (citizen controlled, provider initiated) - Patient mediated (citizen initiated, citizen controlled) • Blazing the transatlantic path – constraints and assumptions - Translation of narrative unstructured content (not in scope) - Incorporate patient summary elements in EHR or PHR (not in scope) - EU Citizens have access to their EU Patient Summary (e.g. epSOS) - US Citizens have access to their Clinical Summary in C-CDA/ CCD • Feasibility study: what have we learned and what are the implications?
  16. 16. Comparison of EHR summaries and the International Patient Summary bottom line Allergies Medications Problems Pregnancy History Expected date of delivery Vaccinations Social History Medical Devices Vital Signs Blood group ProceduresAllergies Problems Immunizations Procedures (surgical ) Functional Status (autonomy / invalidity) Results (blood group ) Social History Observations (lifestyle history ) Vital signs (blood pressure ) Medications Pregnancy history (expected date of delivery ) Advance Directives Encounters Family History Payers CCDPS Plan of Care (therapeutic recommendations )Medical Devices and Implants • Same base Standard (HL7 CDA) • Different philosophy: capture vs continuity of care • Different IGs: C-CDA/CCD (US realm) vs epSOS IG • Different technical approach: Open vs Closed Template
  17. 17. Section Comparison epSOS/EU Directive EU Patient Guidelines epSOS PS CCD Section Optionality Optionality Optionality Optionality Allergy R R Allergies R List of current medicines R R Medications R List of current problems / diagnoses R R Problem R Surgical Procedures prior to the past six months R O Procedures O (R only for inpatients) Major Surgical Procedures in the past six months R R Procedures O (R only for inpatients) Medical Devices and implants R R Medical Equipment O Vaccinations O O Immunizations O List of resolved, closed or inactive problems O O Problem R Social History Observations O O Social History O Pregnancy history (Expected date of delivery) O O Social History (Pregnancy Observation) O Physical findings (Vital Signs Observations) O O Vital Signs O Diagnostic tests (Blood group) O O Results Section R Treatment Recommendations R O Plan of Care O Autonomy / Invalidity R O Functional Status O Advance Directives O Family History O Payer O Encounters O Text only 4 sections not present in epSOS PSepSOS: 14 sections, 1 grouped = 13 sections CCD: 15 sections, 4 not mapped = 11 sections Can be grouped together, only difference is the date
  18. 18. Statistics: coverage of value sets epSOS Value Set epSOS Code System concepts with corresponence/ concepts present/ (% covered) CCD Value Set CCD Code System concepts with corresponence/ concepts present/ (% covered) epSOSActiveIngredient ATC 606/5592 (6%) Medication Drug Class NDF-RT 1365/10699 (13%) epSOSActiveIngredient ATC 2836/5592 (51%) Medication Brand Name RxNorm 3329/13885 (24%) epSOSActiveIngredient ATC 2836/5592 (51%) Medication Clinical Drug RxNorm 9642/31214 (31%) epSOSAllergenNoDrugs SNOMED CT 79/112 (71%) Ingredient Name UNII 5315/63996 (8%)* epSOSRoutesofAdminis tration EDQM Standard Terms 55/73 (75%) Medication Route FDA NCI Thesaurus 57/118 (48%) epSOSDoseForm EDQM Standard Terms 28/457 (6%) Medication Product Form NCI Thesaurus 99/153 (65%) epSOSIllnessesandDisor ders ICD-10 1775/9525 (19%) IHTSDO maps Problem SNOMED CT 7204/16443 (44%) IHTSDO maps epSOSIllnessesandDisor ders ICD-10 1147/9525 (12%) NLM maps Problem SNOMED CT 6914/16443 (42%) NLM maps epSOSVaccine SNOMED CT 27/31 (87%) Vaccine Administered CVX 87/163 (53%)
  19. 19. vaccinations medications encounters Identification allergies Implantable devices Health team Security preferences problems
  20. 20. right and enabler stakeholder groups to identify needs key enablers and success educational and training material
  21. 21. • Quality assurance • Health goals • Early warnings
  22. 22. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. International patient summary (IPS) IG (first ballot Sep 2017)  The International Patient Summary (IPS) is a electronic health record extract containing essential healthcare information intended for use in the unscheduled, cross-border care scenario comprising at least the required elements of the IPS dataset.  The IPS dataset is a minimal and non- exhaustive patient summary dataset, specialty-agnostic, condition-independent, but readily usable by clinicians for the cross-border unscheduled care of a patient. 26
  23. 23. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Vision, Scope, Principles 27 HL7 Int. CEN/TC 251 agreement (April, 2017) Vision • “In order to further the care for citizens across the globe, we agree to collaborate on a single, common International Patient Summary (IPS) specification that is readily usable by all clinicians for the (cross-border) unscheduled care of a patient.” Scope • “The IPS specification shall focus on a minimal and non-exhaustive Patient Summary, which is specialty-agnostic and condition-independent, but still clinically relevant.”
  24. 24. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. International Patient Summary Implementation Guide: Purpose  Goal: identify the required clinical data, vocabulary and value sets for an international patient summary.  The international patient summary is specified using HL7 CDA R2 templates  The primary use case is to provide support for cross- border or cross-juridictional emergency and unplanned care:  Cross-jurisdictional patient summaries (through adaptation/extension for multi-language and realm scenarios, including translation).  Emergency and unplanned care in any country, regardless of language.  Value sets based on international vocabularies that are usable and understandable in any country.  Data and metadata for document-level provenance. 28
  25. 25. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Scope  a minimal and non-exhaustive patient summary  specialty-agnostic,  condition-independent,  but readily usable by clinicians for cross-border unscheduled care of a patient.  In this context, minimal and non-exhaustive means that an IPS is not intended to reproduce (the entire) content of an Electronic Health Record (EHR). It covers the so-called SAMPLE history and beyond.  SAMPLE “Forefront Emergency Data” is a list of items, the information a physician needs to know when he comes to an emergency situation.  This list mentions  S – Signs/Symptoms  A – Allergies (emergency medical care relevant allergies like caused by medication, radiocontrast agents),  M – Medications (current, as recent as possible) and  P – Past Illnesses such as chronic (still active) like coronary heart disease, renal failure or past (not active) diseases like a former myocardial infarction. Other desired information in case of an emergency focuses on  L – last meal/oral intake and the  E – events preceding the accident, emergency or other situation leading up to present contact with the health system.29
  26. 26. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Approach: meet in the middle 30
  27. 27. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Audience The audience for this Implementation Guide includes:  Public  Citizens who want to carry or access their healthcare data for emergency or unplanned care purposes.  Regulatory  Policy makers such as healthcare payers or government agencies.  Healthcare information governance authorities and regulatory bodies.  Clinical  Healthcare providers that offer unscheduled and emergency care.  Healthcare providers that populate regional and national patient summaries.  Technical  Vendors of EHRs unplanned care system, personal health records and mobile health data applications.  System integrators.  Organizations that manage regional and national patient summaries. 31
  28. 28. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Compliance / Traceability The IPS «world» Requirements Design Implementation CEN prEN Conformance Products ART DECOR®; Forge; .. HL7 CDA IG HL7 FHIR IG EU PS Guidelines The Patient Summary for Unscheduled, Cross-border Care IPS: Guidance for European Implementation Technical Specification CEN prTS
  29. 29. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Martha’s Patient Summary - Example 33
  30. 30. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. IPS Structural Choices  FHIR representation of equivalent concepts has been taken into account  FHIR style of representation was adopted rather than conventional CDA  patient summaries universally exchangeable and understood must rely on structured data and multilingual international reference terminologies that are licensed at no cost for global use in the International Patient Summary.  it is expected that SNOMED CT and HL7 will make arrangements per their agreement to support the use of SNOMED CT in HL7 artifacts for global use.  International Patient Summary defines SNOMED CT as a primary terminology and it is used for the majority of value sets.  Other primary terminologies are  LOINC for observations (e.g., laboratory tests) and document sections,  UCUM for units of measure  EDQM for dose forms and routes.  ART-DECOR® is used as the specification platform for this Implementation Guide  browse the specifications and review examples.  use the tool to validate their IPS instances.  For more information check:  the implementation guide: http://international-patient- summary.net/mediawiki/index.php?title=IPS_implementationguide_1  The IPS page on Art Décor: http://art-decor.org/art-decor/decor-project--hl7ips- 34
  31. 31. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Use of tooling to browse and validate implementations 35
  32. 32. © 2017 HL7 ® International. Licensed under Creative Commons. HL7 & Health Level Seven are registered trademarks of Health Level Seven International. Reg. U.S. TM Office. Implementation guide Wiki 36
  33. 33. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium IIThis project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745
  34. 34. Scaling-up the use of patient summaries Emergency • Emergency response teams August 24 2017, Hangzhou, China Building a global community for digital health innovation: the role of patient summaries Trillium-II’s ambition touches individuals through their mobile hub and the community through an aggregating dashboard making the most of our data-driven economy.
  35. 35. https://ec.europa.eu/health//sites/health/files/ehealth/docs/guidelines_patient_summary_en.pdf n = 14
  36. 36. https://survey.enalyzer.com/?pid=misikmit mhm@medcom.dk
  37. 37. The Situation in Denmark Jan Petersen, Chief Consultant MedCom, Denmark Building a global community for digital health innovation: the role of patient summaries
  38. 38.  5,7 million citizens  Centrally-managed health care system  Health care is provided directly by the public sector, primarily paid trough taxes and free of charge 5 Regions + 98 Municipalities  54 Public hospitals (+ 19 Private)  Approx. 2000 GP clinics  Approx. 1200 Specialists  407 Pharmacies 60 IT vendors – 100 IT systems Danish Healthcare Sector - a few facts
  39. 39. Prerequisites for eHealth and standardization in Denmark • Unique Person ID - life-long and multi-purpose since 1968 • National registration of hospital contacts since1976 • Legal authorization registry for health care professionals • Health provider/organization registry since 2006 • National security services • National health service – tax financed • National it-strategies • National classifications and terminology • - and a multi-vendor policy within eHealth • Combination unique to Denmark
  40. 40. eHealth strategies • Multi-vendor policy • Standardised interfaces • Messaging and central services • Consensus building • Regulation through (financial) agreements
  41. 41. The Danish Health Data Network Exchange of data: • Messaging – One-to-one – One data provider - One data consumer • Web service – One-to-many – One data provider – Many data consumers • Index lookup – Many data provider – Many data consumers
  42. 42. • A persistent document composed by a medical doctor • An on-demand document compiled on-the-fly extracting information from relevant sources • A window – giving access to health information relevant to the current clinical workflow/clinical task • Sundhed.dk is such a clinical window Patient summary – different concepts The Human Condition René Magritte (1933)
  43. 43. • The official portal for the public Danish Healthcare Services • Enables citizens and healthcare professionals to find information and communicate • Facilitates patient-centered digital services • Provide access to and information about the Danish healthcare services. Sundhed.dk (sundhed ~ health)
  44. 44. • Providing general health related information to citizens and health care professionals • Granting privileged access to person related health information for citizens and health care professionals • A window for looking into person related health information residing in national and local data repositories • Sundhed.dk is displaying information not storing information • Most information is read-only; with a few exceptions, e.g vaccinations, organ donation Sundhed.dk principles
  45. 45. 54 Available Services: • Appointments • X-ray reports • EHR extracts (hospital) • Lab reports • Your GP • Hospital encounters • Referrals • GP, Dentist, Specialist contacts • Current medication • Vaccinations • Power of attorney • Organ donation • Living will • Scanning program participation • Denial to share information • Access to log data The National Danish Health Portal https://www.sundhed.dk/borger/service/om-sundheddk/ehealth-in-denmark/
  46. 46. 55 • If an IPS (International Patient Summary) is a useful tool in planning and delivering healthcare, then (yes/no questions) – IPS available through an mobile app. – IPS should be accessible in a national health portal – IPS should be controlled by the patient or his relative only – IPS should be accessible by relevant health care professionals – IPS should only reflect the last 2 years history Question to the audience
  47. 47. MedInfo, Hangzhou China August 24, 2017 Stanley M. Huff, MD Sharing Patient Data 56
  48. 48. Sharing Data in the US Between Different EHRs  ~40% of systems are sharing data  ~30% of physicians can find the data  ~20% of the time data is integrated into the physician workflow  ~10% of the time the data has an impact on patient care  Challenges of sharing summary documents 57
  49. 49. Data Exchange vs Services  Data exchange  Standard HL7 messages  Data is copied from one EHR/system to another  Many copies of the same data – oncology, wound care, pharmacy  Difficult to keep multiple copies synchronized  “Two copies of anything will eventually kill you.” – Al Pryor, PhD  One example of data duplication (Intermountain)  49 copies of patient registration data  294 million patient records online  288 million or 97% are duplicate copies  125,000 registration updates/day or 6.1 million total data updates daily 58
  50. 50. Data Exchange vs Services  Standards based services  Data is accessed via standard Application Programming Interfaces (APIs)  The data is accessed in “real time”, on demand  The data does not get stored in the new system  Current best example: HL7 Fast Healthcare Interoperability Resources (FHIR – pronounced like Fire) 59
  51. 51. Healthcare Services Platform Consortium Mission Improve health by creating a vibrant, open ecosystem of interoperable applications, content, and services Vision Be a provider-led organization accelerating the delivery of a platform that supports innovative healthcare applications for the improvement of health and healthcare. 60
  52. 52. Heterogeneous Systems Others … 61 FHIR Profiles from CIMI models 61
  53. 53. Implications for Patient Summaries  The same program could be used to create the patient summary from different EHRs  A program could access multiple EHRs using the same API to create the patient summary  The clinician could review “always” important data  Problem list, allergies, current medications  Followed by focused queries related to the patient  Last 5 HgbA1c, weights in the last year, BPs in last 3 months 62
  54. 54. Typical scenario today…. EHR 2 Patient Summary EHR 3 EHR 1 Unique 1 to 1 messaging specifically created for each clinic for each EHR installed instance 63
  55. 55. Apps that enable data sharing…  Next-gen Interoperability  Disease and quality registries  Population Health integration  HIE integration  Data capture for research  Clinical Trial recruiting EHR 2 Patient Summary EHR 3 EHR 1 Public Health 64
  56. 56. Progress  FHIR is easy to implement  FHIR has unprecedented support from EHR vendors  SMART on FHIR really works!  Applications at Intermountain Healthcare  In use - Pediatric growth chart, Pediatric drug card, BP Centiles  In development – HIE viewer, Pulmonary Embolus diagnosis and management  University of Utah collaborations  ONC Challenge grant: Neonatal bilirubin app  ONC High Impact grant: Surgery transition app 65
  57. 57. What is the Clinical Information Interoperability Council?  We want to create ubiquitous sharing of standardized data across the breadth of medicine for:  Direct patient care  Research and learning  Public health  Clinical trials  International patient summaries  Data from devices  Post market surveillance  Quality and disease specific registries  Billing and health administration  Any where that we share health related data and information …..
  58. 58. HL7 CDA CDISC HL7 FHIR data 138 mmHg SystolicBPSystolicBPObs quals data Right Arm BodyLocatio n BodyLocation data Sittin g PatientPositi on PatientPosition SNOMED CT LOINC or SNOMED Observable Repository of Shared Models in an approved Formalism Model Review SNOMED CT LOINC RxNorm Core Reference Model Standards Infusion CEMs Initial Loading of Repository DCMs CDEs CDA Templates openEHR Archetypes ISO EN 13606 Archetypes FHIM Models FHIR Resources Logical Model Development Lifecycle CDISC SHARE Model Dissemination Translators HL7 V2 NCPDP X12
  59. 59. Why? “To help people live the healthiest lives possible.”
  60. 60. Patient 69
  61. 61. Core Assumptions ‘The complexity of modern medicine exceeds the inherent limitations of the unaided human mind.’ ~ David M. Eddy, MD, Ph.D. ‘... man is not perfectible. There are limits to man’s capabilities as an information processor that assure the occurrence of random errors in his activities.’ ~ Clement J. McDonald, MD 70
  62. 62. Eileen
  63. 63. Why?  We need to  Provide better care  By sharing executable clinical decision support modules  Decrease cost  Make clinicians and patients happier  Provide accurate computable data as the foundation of a learning health system
  64. 64. The July 13th meeting in Bethesda  Keynote speaker – Don Rucker, MD (National Coordinator for HIT)  About 120 attendees  Representing – AAN, AAO, ACOG, ACS, ACC, ACP, APTA, ANA, FDA, CDC, NCI, AHRQ, NIAID, DoD, VA, PCPI, AMIA, SPM, HIMSS and many other organizations  Meeting outcomes  CIIC should continue  Create mission, vision, a plan for initial governance  Develop a mailing list and a discussion forum  Projects  ACOG – OPA – FPAR, Cancer DTR, MDEpiNet RAPID, Wound Assessment, PCPI registry interoperability project, Quality measures  Next meeting – December 5-7 in New Orleans with HL7 Partners in Interoperability
  65. 65. The End 74
  66. 66. 17/02/2018 Building a Global Community for Digital Health Innovation: the Role of Patient Summaries 24.08.2017 Henrique Martins | President of the Board of SPMS
  67. 67. Thecitizeninthecentreofthesystem
  68. 68. International Patient Summary Strategic Intent Citizens have scattered data, in multiple locations Citizens have data in multiple systems Citizens receive care in multiple places Citizens receive care in multiple contexts Citizens own their data Citizens want to control their data… Citizens wnat to write their health data Citizens take pills (imagine… by them selves…) GREAT!! Ego…. The citizen will gather, collect, analyse and validade, identify and question his/her health data, will “move” part of the data with in, to him, to others, to the governement for secundary use. The citizen will move his/her data to the care setting… Information nomadicity ERA
  69. 69. Health data “dispersion”
  70. 70. ELETRONIC HEALTH RECORD Health data “dispersion”
  71. 71. Aggregatedata
  72. 72. Aggregatedata
  73. 73. ELETRONIC HEALTH RECORD (National? Or Personal?) Aggregatedata
  74. 74. ENESIS2020–NationalStrategyforHealthInformationEcosystem2020 Strategic Principles and Objectives:  …principle of transparency and open data, proactive management of the value of health data, and promotion of a new knowledge-based knowledge economy;  …principle of centrality in the citizen;  …principle of data portability (...) adoption of the Mobile Health / mHealth concept;  Promotion of interoperability (...)  Adoption of a comprehensive governance model (...) Council of Ministers Resolution n.º 62/2016
  75. 75. Videocall On Web: site and email On APP and Phone NO Paper! ENESIS2020–NationalStrategyforHealthInformationEcosystem2020
  76. 76. Citizen Portal – revamped!
  77. 77. 4thyear–NewLook,MultipleAuthentication
  78. 78. My Patient Summary Citizen Portal: Patient Summary (your control, atomized)
  79. 79. My Patient Summary PDF download 1st step in portability Patient input Professionals input Citizen Portal: Patient Summary (your control, atomized)
  80. 80. The Citizen in the centre of the system
  81. 81. MySNSWallet Portability – the Patient Summary and additional relevant Health information directly in the Citizen’s possession. Tailoring – the Citizen can choose what information is relevant for him, download only those cards, delete them or add new ones when he wants. Your Patient Summary in your pocket!
  82. 82. MySNS Wallet: new cards with new information • Allergies; • Vaccines; • Procedures; • Diagnostics; • Medical Devices; • Medication; • Rare Diseases; • Living Will; • Emergency card; • Blood Donor; • Oral Health; • …
  83. 83. MySNS WaitTimes Real time information on waiting time for emergency rooms Citizens’ “own” information Information anywhere
  84. 84. MySNS
  85. 85. Appsinnumbers MySNS Wait Times 29 597 Downloads* MySNS Wallet 7 066 Downloads* MySNS 65 739 Downloads* *Date 21/08/2017
  86. 86. PROGRESSIVE SUMS – “Improving the Health of the Portuguese, card by card”
  87. 87. MySNS – Wallet: NHS Access card
  88. 88. MySNS – Wallet: ePrescription
  89. 89. Card by Card… we are making Portguese Health better! Individual Vaccines Card 4 298 408 Total treated individual s 2 542 202 Patient with Vaccine registratio n Number of patients existing in the original and treated database. It includes all users who have at least one contact with the migrated CS (enrolled, non-registered and sporadic), and the same user will count as many times as the different CSs where they have passed. 1 985 694 Patient with Active enrollme nt Number of migrated patients with active enrollment in HealthCare already migrated Number of patients migrated with contact with CS already migrated and with registration of vaccines. 44 641 Centrally registered vaccines (since april 2016)
  90. 90. Citizens’ (real) Individual Vaccines Card
  91. 91. MySNSCommunity https://comunidade.mysns.pt/
  92. 92. MySNSCommunity https://comunidade.mysns.pt/
  93. 93. Aninvitation
  94. 94. Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary Trillium II
  95. 95. Health Systems and Associated Competence centers: Third parties
  96. 96. mhm@medcom.dk euoffice@HL7.org www.trilliumbridge.eu August 24 2017, Hangzhou, China Building a global community for digital health innovation: the role of patient summaries EvaluateBridge HarmonizeGuide
  97. 97. euoffice@HL7.org mhm@medcom.dk JAP@medcom.dk Stan.Huff@imail.org Michael.storck@uni-muenster.de Catherine.staes@hsc.Utah.edu shifrin@nsi.ru hc978@uowmail.edu.au ellentong@ha.org.hk haepary@naver.com gary.leeming@manchester.ac.uk ClemMcDonald@mail.nih.gov ikkimgg@gmail.com mbr@mediq.dk

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