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Standards as Infrastructure for Innovation

  1. 1. Towards a European ecosystem for health care data eStandards as infrastructure for innovation Catherine Chronaki Secretary General HL7 Foundation, Brussels, Belgium Contact: euoffice@HL7.org Funded under H2020-643889
  2. 2. 2 HL7 Foundation: who we are.. HL7 the best and most widely-used eHealth standards since 1986 HL7 v2, Clinical Document Architecture, HL7 FHIR 19 National Affiliates in Europe (~38 wordwide) European HL7 foundation established in 2010 European Funded Research Projects eHGI, Antilope, Semantic Healthnet, Trillium Bridge, Expand, Trillium-II PHC34: ASSESS CT, OpenMedicine, eStandards Annual HL7 in Europe Newsletter Website: www.HL7.eu eHealth policy & Research eHealth stakeholders group; mHealth Guidelines; ENISA expert group EFMI council (2012-): eHealth Week EFMI Board (2016) HIMSS Europe SDO Joint Initiative Council HL7 Vision: A world in which everyone can securely access and use the right health data when and where they need it. Digital Enlightment Forum: Towards a European Ecosystem for Health Care
  3. 3. Forces facing health systems: technology •Rapid progress in analytics and digitization •Innovation in medicine
  4. 4. Digital Single Market – digital health priorities and challenges Pillars of digital transformation in health and social care  Give citizens better access to their health data everywhere in the EU  Connect and share health data for research, faster diagnosis, and better health outcomes  Use digital services for citizen empowerment and person-centered care. Challenges  Risks of privacy breaches (65.89%)  Heterogeneity of electronic health records (58.24%)  Cybersecurity risks (54.42%)  Lack of technical interoperability (48.46%)  Data quality and reliability (45.32%)  Lack of infrastructure (44.02%) Digital Enlightment Forum: Towards a European Ecosystem for Health Care
  5. 5. 5 eStandards can unlock data for trust & flow Today: Massive health data accumulated in silo EHR systems for documentation Need to move from passive documentation to active use of information and knowledge creation: activation! Patient summaries defined at the macro level for cross-border exchange for emergency or unplanned care at a national level. Need to address communities and individuals! Standards and profiles address a predefined exchange of information. Need flexible use of available content and structure, recognizing national, regional or local jurisdictions: trust & flow! Digital Enlightment Forum: Towards a European Ecosystem for Health Care
  6. 6. 6 eStandards Project Highlights Problem: Standards roadmap to support large-scale eHealth deployment Ambition: Re-establish SDOs as the authority and shepherd of high quality widely-adopted standards that advance cost effective sustainable interoperability. Key outcomes: Co-creation, Governance, Alignment Framework eStandards lifecycle model Best practices today in health data exchange Next steps: eStandards workshop as part of the JIC meeting in London, Nov 2017 Engage stakeholders eHealth Stakeholder Group Digital Enent Forum: Towards a European Ecosystem for Health Care
  7. 7. 7 eStandards project vision is that of a global eHealth ecosystem Where:  people have navigation tools for safe and informed health care  interoperability assets fuel creativity, entrepreneurship, and innovation eStandards:  nurture digital health innovation  strengthen Europe’s voice & impact  enable co-creation and trusted provider-user relationships www.estandards-project.eu Roadmap available at: Digital Enlightment Forum: Towards a European Ecosystem for Health Care Source: eStandards D3.1
  8. 8. 8 Making Digital Work for health with Trust and Flow Co-create to make it real using standards Governance to make it scale for large-scale deployment Alignment to make it flourish in a sustainable way Digital Enlightment Forum: Towards a European Ecosystem for Health Care http://www.hl7.org/fhir
  9. 9. 9 Patient summary as Health data navigator Think of the Patient summary as a window to a person’s health or dashboard: Medications, allergies, vaccinations, problems and procedures, labs, diagnostic imaging, recent or planned encounters, implantable devices advance directives “Bring the Power of Platforms to Health Care” using data to drive: administrative automation, networked knowledge, and resource orchestration [Bush & Fox, HBR November 2016] eStandards need to help build trust unlock the power of health data facilitate decision support navigate the health system Digital Enlightment Forum: Towards a European Ecosystem for Health Care
  10. 10. 10 International Patient Summary (IPS) Implementation Guide: Purpose & Scope Goal: identify the required clinical data, vocabulary and value sets for an international patient summary. 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.” 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. Digital Enlightment Forum: Towards a European Ecosystem for Health Care
  11. 11. 11 What is FHIR? Based on a set of modular components - “Resources” Resources refer to each other using URLs Small discrete units of exchange with defined behaviour and meaning Have known identity and behaviour Extensions permit adding data not part of core Resources are combined into “Profiles” to solve clinical & admin problems Parties exchanging data define the specifics of using resources and their relations using Profiles. Profiles are the framework for defining services. Test data and servers are available Exchange resources between systems Using a RESTful API (e.g. web approach) As a Bundle of resources (messages, documents) Positives Service driven - composition Modify components with changing need Portability of components by moving code with the data Digital Enlightment Forum: Towards a European Ecosystem for Health Care Modified from: Ed Hammond 2016 Let’s have a look: https://www.hl7.org/fhir/
  12. 12. 12 Patient History: Resource explorer Click on instance to see details Source from David Hay Digital Enlightment Forum: Towards a European Ecosystem for Health Care Implementation Global Free
  13. 13. 13 Emergency department as decision environment High decision density Decision fatigue Throughput pressure Wide range of illnesses Diagnostic Uncertaintly Narrow time windows Interruptions and distractions Shift work/sleep disruption Shift changes cognitive decline at the end of a shift 30% Diagnostic Error in ED Radiology 5% Missed injuries 12% Cardiovascular 19% Respiratory 30% Overall ~16% Digital Enlightment Forum: Towards a European Ecosystem for Health Care Source: Dr. Pat Croskerry, Emergency London; https://www.youtube.com/watch?v=GFE6D5460oE It’s not about what we know, it’s about how we think!
  14. 14. 14 Emergency data sets Digital Enlightment Forum: Towards a European Ecosystem for Health Care http://aktin.art-decor.org source: Kai Heitmann https://tinyurl.com/y7assld4
  15. 15. • Quality assurance • Health goals • Early warnings Can we use patient summaries to unlock patient data?
  16. 16. 16 Can Patient summaries leverage HL7 FHIR to unlock the power of data and drive our digital future? YES, HL7 FHIR is part of the solution It opens a window, but It takes a village… Digital Enlightment Forum: Towards a European Ecosystem for Health Care
  17. 17. 17 What do we need to make it happen with standards and interoperability? Co-create make it real by standards Governance scale for large-scale deployment Alignment flourish in sustainable ways Digital Enlightment Forum: Towards a European Ecosystem for Health Care
  18. 18. mhm@medcom.dk euoffice@HL7.org www.trilliumbridge.eu Digital Enlightment Forum: Towards a European Ecosystem for Health Care EvaluateBridge HarmonizeGuide

Editor's Notes

  • Good morning, ladies and gentlemen.
    How we can use patient summaries / medical histories/ data in the emergency room to improve decision making: quality and speed?
  • The transparency into care dlivery performance makes possible very different payment and risk intermediation models: expansion of episode and bundled payment modesl, incentives baded on population health, complete capitated risk, transfer levels of financial risk to providers.
    Potential for transparency in the care delivery performance can test bundled payment modes, incentives based on population health, eliminate 30 day -readmission costs

    Wearable trackers quantify personal activity generating valuable data for private payors: measures collected, fully automated visualization and longitudinal evaluation, comparison with family, friends, and the online community.

    AXA partner with Samsung to provide discounts for healthy behavior
    John Hancock uses fitbit for life insurance offering 15% discound
    Generali uses discovery health, and offers vouchers and gifts for activity and prevention exams



  • Systems of record – SQL / CDA/CCD /
    Systems of differentiation – IHE Profiles / PCHA/Continua Profiles
    Systems of innovation – FHIR / OpenEHR Archetypes

    Data drive a wave of automation aspiring to improve care
    forge connections of health & wellness, medical research, and clinical decision support.
    Healthcare systems can rely on digital technologies to
    sustain costs, improve access, provide quality care facing dwindling resources and increasing demand
    offer mobile patient- and provider-facing apps
    mix patient-generated data with provider medical notes
    use data to shape personalized care pathways
    provide just-in time access to health services in person or online

    Health information technology standards are at the core of the compass, to tap the potential of shared aggregate data and sustain trust.
  • At a rapid face of just-in-time disruption, Standards Developing Organizations need to cooperate
    to deliver quality, interoperability, and knowledge timely at an affordable cost.
    to look outside
    to listen to the users
    to rethink standards and tools that support their full lifecycle
    To deliver live eStandards

    a digital health compass can support safety, prevent harmful events, and assist in managing efficient, connected services of high quality and relevance in the digital health ecosystem. Health data standards, open interfaces, and a culture of sharing increase trust. Complementary initiatives to health information technology standards are the Dublin Core Metadata Initiative (DCMI) headings, the HONCode labelling online health resources, and W3C guidelines for usability and accessibility building confidence in navigation.

    Health information technology standards are required to provide common metadata about digital health products and assemble fragmented information scaling up and sustaining digital health literacy [5, 9]. Standards developing organizations work together on standards to meet the health information needs of people within and across health facilities. The value of data and the increasing focus on patient experience, dictates global cooperation on open standards emphasizing mobile use.
  • To develop, deliver, test and deploy standards sets which are properly adapted to a dynamic healthcare system, we need a constant flow of interaction between three types of activities:

    Co-creation between all relevant stakeholders
    to make it real using standards

    A supportive and appropriate governance system
    to make it scale toward large-scale deployment

    The flexibility to adapt and align as needs and requirements change
    to make it stay in a sustainable way
  • .Establishing incentives for high quality recording or assembly of patient summary data can directly improve data insights guiding interventions with direct impact on increased productivity, and patient satisfaction. Note that the concept of health system navigators is not new. It was first introduced by Harold Freeman in 1990. Assisted by medical students, patients are able to navigate the logistical, emotional, and frequently cultural barriers of receiving care. Patients are assisting in assessing the situation and choices, articulate objectives, evaluate alternatives and reach decisions. In the end, healthcare is analog and human touch is paramount. Digital health tools can help fill the intention gap!
    http://www.hpfreemanpni.org/
  • 30% cognitive decline, Decision ; rational mind observing your intuitive mind…
    Dual process: analytical and intuitive thinking
  • This workshop will:
    Introduce the aims of the Trillium II project
    Present approaches from three different countries: Denmark, USA
    Collect input on the International Patient Summary among participants
    Open a discussion on how to assess, bridge and harmonizing relevant initiatives around the globe in an effort to attract new members to GC-DHIP and create a network effect that will nurture innovation and fuel creativity with global standards serving as infrastructure for interoperability.
  • To develop, deliver, test and deploy standards sets which are properly adapted to a dynamic healthcare system, we need a constant flow of interaction between three types of activities:

    Co-creation between all relevant stakeholders
    to make it real using standards

    A supportive and appropriate governance system
    to make it scale toward large-scale deployment

    The flexibility to adapt and align as needs and requirements change
    to make it stay in a sustainable way
  • Co-create: identify situations of patient summary use beyond emergency and unplanned care
    Bridge: patient summary projects and initiatives identifying good and bad practices
    Validate: Develop, Collect, Assess learning resources to validate content
    Engage: mobile Health community to foster innovation & inform health policy
    Contribute: feedback to standards organizations improving patient summary standards

    The purpose of the Global community for digital health innovation practice is to identify relevant projects and use cases of interest that will help validate and promote the use of international patient summary standards in demonstrations, readiness exercises, and other pilot projects.
    Founding members of GC-DHIP are members of the Trillium-II consortium that have committed to pilot project demonstrations.
    Additional organizations and pilot projects implementing patient summaries are invited to join.
    eHealth programs of Luxenburg (eSante), Catalonia, Spain (TicSalut), Denmark (MedCom), Portugal (SPMS), Sequoia (US), HSPC (US) are part of the steering committee of GC-DHIP and Henrique Martins, is the first chairman.
    The community has also close connections to the eHealth Digital Services Infrastructure services established under the Connected Europe Facility.
    Why join?
    Be part of a global community and exchange knowledge with other countries
    If you know about Patient Summaries
    If you are curious about Patient Summaries
    If you want to influence an International Patient Summary
    If you want to be part of an international effort with local impact

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