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The role of clinicians in
clinical concept modelling
                     Dr Dipak Kalra
  Centre for Health Informatics and Multiprofessional Education
                             (CHIME)
                    University College London
                     d.kalra@chime.ucl.ac.uk
European health systems:
priorities and challenges
• Growing expectations for equity of access, quality and
  efficiency, patient empowerment and engagement
• Rising incidence of chronic diseases and increased
  complexity of their treatment
    • age related: dementia, cancer
    • lifestyle related: diabetes, asthma, obesity, ischaemic heart
      disease
• Growing expectations and concerns about patient safety
• Need for better integration across wellness, health care,
  public health, occupational health and social care
• Demographic change: ageing population
• Societal pressure for demonstrable protection of privacy

 EU National ICT Research Directors Forum, November 9th, 2009
A pan-European Health Infostructure


                      Wellness                                                            Social care
                       Fitness                        Citizen in the                     Occupational
                    Complementary                      community                            health
                       health                                                            School health



    rapid bench to bed translation                                                    real-time knowledge directed care



                                                      Point of care
                                                        delivery


    Teaching                   explicit consent
   Research
  Clinical trials


                                                    Continuing care
                                                  (within the institution)


    Education                   de-identified                                implied consent             Public health
    Research                                                                                              Health care
  Epidemiology                   +/- consent                                                             management
   Data mining                                                                                           Clinical audit

                                                   Long-term shared
                                                     care (regional
                                                     national, global)
Goals for EHR semantic
interoperability
• To support patient safety, quality of care, chronic
  disease management, extended home-care, patient
  empowerment
   • enable the safe, meaningful sharing and combining of health
     record data between heterogeneous systems and actors / care
     providers
   • enable the integration and safe use of computerised protocols,
     alerts and care pathways by EHR systems
   • link EHR data to explanatory and educational materials to
     support patient and family engagement and professional
     development
   • ensure the necessary data quality and consistency to enable
     meaningful and reliable use of longitudinal and heterogeneous
     data for public health, research, health service management
Electronic Health Record - EHR 2.0

       Clinical trials,
                                                            Decision support,
   functional genomics,        EHR repositories          knowledge management
  public health databases
                                                         and analysis components




                                  Integrating
                                  information
                               Centring services
                                       Whittington
                                       Hospital



                                  on Healthcare Record
                                     citizens
Personnel registers,              Creating and
                                     John Smith
                                     DoB: 12.5.46

 security services              using knowledge
                                                                 Mobile devices




                                                                          Clinical
   Clinical devices,                                                    applications
     instruments               Social computing:
                            forums, wikis and blogs
Contextual building blocks of the EHR


                         Part or all of the electronic health record
  EHR Extract            for one person, being communicated

                         High-level organisation of the EHR
  Folders                e.g. per episode, per clinical speciality

                         Set of entries comprising a clinical care
  Compositions           session or document e.g. test result, letter

                         Headings reflecting the flow of information
  Sections               gathering, or organising data for readability

                         Clinical “statements” about Observations,
  Entries                Evaluations, and Instructions
                         Multipart entries, tables,time series,
  Clusters               e.g. test batteries, blood pressure, blood
                         count
                         Element entries: leaf nodes with values
  Elements               e.g. reason for encounter, body weight

                         Date types for instance values
  Data values            e.g. coded terms, measurements with units
ISO EN 13606-1 Reference Model
The EHR landscape that needs modelling




                          Treatment
                   Medication and prescriptions

                                                Hypotheses,
                                                     Advice and education
 Symptoms                                       health issues
                                             Self management
 and history                                      (problemsChronic
                                            and home monitoring
                                                      and summary Prevention and
                                  Conventional medical diseaseWell-being and fitness,
                                                                         screening,
                                                 diagnoses),rehabilitation after illness
                                                         manageme
     Body physical                                   risks               population
                                                             nt
  examination findings    Tests and investigations                         health
                                         Care planning                   measures
                                                              Social welfare, culture,
                                                                religion, attitudes,
                                                            expectations, hopes, fears
           Procedures and operations
                                                   Protocols, guidelines, care
                                                           pathways

                          Communication, team-based collaboration


                         Consent, permissions, disclosures, complaints
The EHR landscape that needs modelling



Hospital admission
               Treatment
                     Medication and prescriptions

                                                  Hypotheses,
                                                       Advice and education
   Symptoms                                       health issues
                                               Self management
   and history                                      (problemsChronic
                                              and home monitoring
                                                       Mental health
                                                        and summary Prevention and
                                    Conventional medical diseaseWell-being and fitness,
                                                                           screening,
                                                   diagnoses),rehabilitation after illness
                                                           manageme
       Body physical                                   risks               population
                                                               nt
    examination findings    Tests and investigations                         health
                                           Care planning                   measures
                                                                Social welfare, culture,
                                                                  religion, attitudes,
                                                              expectations, hopes, fears
             Procedures and operations
                                                     Protocols, guidelines, care
Cardiovascular medicine                                      pathways

                            Communication, team-based collaboration


                           Consent, permissions, disclosures, complaints
What is a clinical archetype?


  • a clinical archetype is an agreed, formal and
    interoperable specification
  • for representing a given clinical entity such as a
    clinical observation, a finding, a plan or a treatment
  • within an electronic health record

  •   invented and maintained by openEHR
  •   ratified by CEN: EN 13606 Part 2
  •   ratified by ISO: ISO 13606 Part 2
  •   to be quality labelled and licensed by EuroRec
What value do archetypes add?

• A user friendly means to capture and collate professional
  consensus on how clinical data should be represented
• A formal model of clinical domain concepts
   • e.g. “blood pressure”, “discharge summary”, “fundoscopy”
• Can provide a focussed context for selection of relevant
  terms
• Can be published and shared within a clinical community, or
  globally
• Can be imported by vendors into EHR system data
  dictionaries
• Defines a systematic EHR target for queries and for decision
  support
openEHR Clinical Knowledge Manager
http://www.openehr.org/knowledge/
openEHR Clinical Knowledge Manager
http://www.openehr.org/knowledge/
openEHR Clinical Knowledge Manager
http://www.openehr.org/knowledge/
openEHR Clinical Knowledge Manager
http://www.openehr.org/knowledge/
openEHR Clinical Knowledge Manager
http://www.openehr.org/knowledge/
openEHR CKM archetypes

•   Gold standard (best practice) definitions
•   Leveraging the available published evidence
•   Referring to as many guidelines as can be found
•   Inclusive of as many variants on the requirements as
    possible (maximal)
•   Openly developed in a social community environment
•   Wide, international multi-stakeholder contributions
•   Dependent upon level of interest, and on high quality
    inputs (like Wikipedia)
•   Final decisions based on consensus
Royal College of Physicians: Clinical
headings
• A standard and defined set of headings for
   • acute medical admission
   • hospital handover
   • discharge summary
• Method:
   •   literature reviews
   •   evaluating proformas used by different NHS Trusts
   •   clinician workshops
   •   a questionnaire based on the headings and definitions
        • > 3000 people responded and 80% agreed on 30 of the 36 suggested
          headings

• Feedback and subsequent endorsement from several
  other Royal Colleges
RCP Archetype approach

•   Selection of a focussed domain
•   Single profession, for now
•   Start top down, with clinical headings
•   Define content per heading
•   Involve clinicians and other stakeholders through
    workshops
•   Get them to propose content
•   Focus on what every good doctor should record
•   Not necessarily maximal
•   Consider most items to be optional
•   Use a paper record template to provide a visual cue to
    the content being proposed
North Central London Integrated Care



     Whittington Hospital
     and its collaborating
           Hospitals



Collaborative                                     GP Practices
development                    Consultant-led           and
  of EHR                     Community Clinical   Pharmacies
   systems                       Services

            CHIME
             (UCL)
Commonly used fragments


Generic                   Medical summary


                          Medication, prescriptions


                                                                          planning
                                                        Anticoagulation
                                                                          monitoring
                          Cardiovascular
                                                                          cardiac
                                                        Heart failure
                                                                          respiratory
Disease management
                                                                          scales & scores
                                                        Assessment
                                                                          self-care
                          Dementia
                                                                          prescriptions
                                                        Treatment
                                                                          effectiveness

                         Consents, carers

Shared care management   Clinical letters and reports

                         Notifications and alerts

Audit and governance
Commonly used fragments


Generic                   Medical summary


                          Medication, prescriptions


                                                                          planning
                                                        Anticoagulation
                                                                          monitoring
                          Cardiovascular
                                                                          cardiac
                                                        Heart failure
                                                                          respiratory
Disease management
                                                                          scales & scores
                                                        Assessment
                                                                          self-care
                          Dementia
                                                                          prescriptions
                                                        Treatment
                                                                          effectiveness

                         Consents, carers

Shared care management   Clinical letters and reports

                         Notifications and alerts

Audit and governance
planning
                               Indication for anticoagulation - {mandatory, ordinal, 15 specified
                               conditions}
                               Other indication - {optional, free text}
                               Anticoagulant drug name - {mandatory, ordinal, 3 specified drugs}
                               Target INR - {mandatory, quantity, range 0-5}
                               Target INR range
                                        Upper - {mandatory, quantity}
                                        Lower - {mandatory, quantity}
                               Intended end date - {optional, calendar date}     ------------- one
                               must
                               If life-long treatment intended - {optional, Boolean} ------------- be
                               provided
                               Actual end date - {optional, calendar date}
                               Precautions to be taken - {optional, free text}
Anticoagulation




                  monitoring
planning

                  monitoring   Present health situation
                               Treatment controller
                               Current INR
                               Decision support recommended warfarin dose
                               If recommended dose accepted
                               Actual warfarin dosage
                               Decision support recommended monitoring interval
                               If recommended interval accepted
                               Actual appointment date
                               Clinic name
                               Advice given
                               Medical comments
Anticoagulation
De facto archetype approach

• Focus on the specific support of clinical shared care
• Work with multiple professionals from the start
• Develop archetypes with a view to what is feasible to
  record and useful to share
• Archetypes mirror the data structures in real use
• Build on existing paper and electronic systems if they
  are useful and used
• Developed with rapid reflection back via clinical
  application screens and practice data entry
• Diversity still needs to exist - clinical best practice might
  not always be at a consensus - yet!
Best practice:
               published evidence, guidelines,
                  international consensus,
              focus onand prescriptions completeness
                 Medication maximal
                        Treatment


                                                    Advice and education
                                               Hypotheses,
Symptoms                                 Self management and
                                               health issues
                                                         Chronic
and history                                                           Prevention and
                                            home monitoring
                                              (problems disease
                                                         and
                                Conventional medical summary             screening,
                                                diagnoses), Well-being and fitness,
                                                       managemen
                                                                         population
                                                            rehabilitation after illness
   Body physical                                   risks     t
                                                                           health
examination findings    Tests and investigations                         measures
                                       Care planning
                                                             Social welfare, culture,
                                                               religion, attitudes,
                               De facto:                   expectations, hopes, fears

         existing operations
         Procedures and practice, existing systems,
                                           Protocols, guidelines, care
                                                    pathways
                         local consensus,
                      Communication, team-based collaboration
           focus on supporting shared care
                       Consent, permissions, disclosures, complaints
Key challenges for successful
clinical modelling
• Semantic interoperability needs to be underpinned by
  shared clinical data structures: archetypes
• Large scale, professionally-driven, archetype library
  development is now needed
• Professionals will need better (ontology-driven) visuals
  to understand their archetype landscape
• Rapid testing of models via clinical applications is vital
• The quality labelling and publication of archetypes must
  be centrally co-ordinated within Europe
• More research is needed on how SNOMED CT can
  help with semantic consistency across multiple
  archetypes
Getting clinical engagement right


 •   Involve a wide range of working clinicians
 •   Develop archetypes with multi-professional input
 •   Combine available evidence and consensus practice
 •   Solve real clinical information gaps
     • join up virtual teams to improve safety and shared care
     • define the benefits right at the start
 • No need to structure everything
     • start by codifying the data that will improve care
     • remember narrative is good for human to human communication
 • Quality assure archetypes before they are used
 • Pilot in real settings before wide roll out

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The Role of Clinicians in Clinical Concept Modelling

  • 1. The role of clinicians in clinical concept modelling Dr Dipak Kalra Centre for Health Informatics and Multiprofessional Education (CHIME) University College London d.kalra@chime.ucl.ac.uk
  • 2. European health systems: priorities and challenges • Growing expectations for equity of access, quality and efficiency, patient empowerment and engagement • Rising incidence of chronic diseases and increased complexity of their treatment • age related: dementia, cancer • lifestyle related: diabetes, asthma, obesity, ischaemic heart disease • Growing expectations and concerns about patient safety • Need for better integration across wellness, health care, public health, occupational health and social care • Demographic change: ageing population • Societal pressure for demonstrable protection of privacy EU National ICT Research Directors Forum, November 9th, 2009
  • 3. A pan-European Health Infostructure Wellness Social care Fitness Citizen in the Occupational Complementary community health health School health rapid bench to bed translation real-time knowledge directed care Point of care delivery Teaching explicit consent Research Clinical trials Continuing care (within the institution) Education de-identified implied consent Public health Research Health care Epidemiology +/- consent management Data mining Clinical audit Long-term shared care (regional national, global)
  • 4. Goals for EHR semantic interoperability • To support patient safety, quality of care, chronic disease management, extended home-care, patient empowerment • enable the safe, meaningful sharing and combining of health record data between heterogeneous systems and actors / care providers • enable the integration and safe use of computerised protocols, alerts and care pathways by EHR systems • link EHR data to explanatory and educational materials to support patient and family engagement and professional development • ensure the necessary data quality and consistency to enable meaningful and reliable use of longitudinal and heterogeneous data for public health, research, health service management
  • 5. Electronic Health Record - EHR 2.0 Clinical trials, Decision support, functional genomics, EHR repositories knowledge management public health databases and analysis components Integrating information Centring services Whittington Hospital on Healthcare Record citizens Personnel registers, Creating and John Smith DoB: 12.5.46 security services using knowledge Mobile devices Clinical Clinical devices, applications instruments Social computing: forums, wikis and blogs
  • 6. Contextual building blocks of the EHR Part or all of the electronic health record EHR Extract for one person, being communicated High-level organisation of the EHR Folders e.g. per episode, per clinical speciality Set of entries comprising a clinical care Compositions session or document e.g. test result, letter Headings reflecting the flow of information Sections gathering, or organising data for readability Clinical “statements” about Observations, Entries Evaluations, and Instructions Multipart entries, tables,time series, Clusters e.g. test batteries, blood pressure, blood count Element entries: leaf nodes with values Elements e.g. reason for encounter, body weight Date types for instance values Data values e.g. coded terms, measurements with units
  • 7. ISO EN 13606-1 Reference Model
  • 8. The EHR landscape that needs modelling Treatment Medication and prescriptions Hypotheses, Advice and education Symptoms health issues Self management and history (problemsChronic and home monitoring and summary Prevention and Conventional medical diseaseWell-being and fitness, screening, diagnoses),rehabilitation after illness manageme Body physical risks population nt examination findings Tests and investigations health Care planning measures Social welfare, culture, religion, attitudes, expectations, hopes, fears Procedures and operations Protocols, guidelines, care pathways Communication, team-based collaboration Consent, permissions, disclosures, complaints
  • 9. The EHR landscape that needs modelling Hospital admission Treatment Medication and prescriptions Hypotheses, Advice and education Symptoms health issues Self management and history (problemsChronic and home monitoring Mental health and summary Prevention and Conventional medical diseaseWell-being and fitness, screening, diagnoses),rehabilitation after illness manageme Body physical risks population nt examination findings Tests and investigations health Care planning measures Social welfare, culture, religion, attitudes, expectations, hopes, fears Procedures and operations Protocols, guidelines, care Cardiovascular medicine pathways Communication, team-based collaboration Consent, permissions, disclosures, complaints
  • 10. What is a clinical archetype? • a clinical archetype is an agreed, formal and interoperable specification • for representing a given clinical entity such as a clinical observation, a finding, a plan or a treatment • within an electronic health record • invented and maintained by openEHR • ratified by CEN: EN 13606 Part 2 • ratified by ISO: ISO 13606 Part 2 • to be quality labelled and licensed by EuroRec
  • 11. What value do archetypes add? • A user friendly means to capture and collate professional consensus on how clinical data should be represented • A formal model of clinical domain concepts • e.g. “blood pressure”, “discharge summary”, “fundoscopy” • Can provide a focussed context for selection of relevant terms • Can be published and shared within a clinical community, or globally • Can be imported by vendors into EHR system data dictionaries • Defines a systematic EHR target for queries and for decision support
  • 12. openEHR Clinical Knowledge Manager http://www.openehr.org/knowledge/
  • 13. openEHR Clinical Knowledge Manager http://www.openehr.org/knowledge/
  • 14. openEHR Clinical Knowledge Manager http://www.openehr.org/knowledge/
  • 15. openEHR Clinical Knowledge Manager http://www.openehr.org/knowledge/
  • 16. openEHR Clinical Knowledge Manager http://www.openehr.org/knowledge/
  • 17. openEHR CKM archetypes • Gold standard (best practice) definitions • Leveraging the available published evidence • Referring to as many guidelines as can be found • Inclusive of as many variants on the requirements as possible (maximal) • Openly developed in a social community environment • Wide, international multi-stakeholder contributions • Dependent upon level of interest, and on high quality inputs (like Wikipedia) • Final decisions based on consensus
  • 18. Royal College of Physicians: Clinical headings • A standard and defined set of headings for • acute medical admission • hospital handover • discharge summary • Method: • literature reviews • evaluating proformas used by different NHS Trusts • clinician workshops • a questionnaire based on the headings and definitions • > 3000 people responded and 80% agreed on 30 of the 36 suggested headings • Feedback and subsequent endorsement from several other Royal Colleges
  • 19.
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  • 24.
  • 25. RCP Archetype approach • Selection of a focussed domain • Single profession, for now • Start top down, with clinical headings • Define content per heading • Involve clinicians and other stakeholders through workshops • Get them to propose content • Focus on what every good doctor should record • Not necessarily maximal • Consider most items to be optional • Use a paper record template to provide a visual cue to the content being proposed
  • 26. North Central London Integrated Care Whittington Hospital and its collaborating Hospitals Collaborative GP Practices development Consultant-led and of EHR Community Clinical Pharmacies systems Services CHIME (UCL)
  • 27. Commonly used fragments Generic Medical summary Medication, prescriptions planning Anticoagulation monitoring Cardiovascular cardiac Heart failure respiratory Disease management scales & scores Assessment self-care Dementia prescriptions Treatment effectiveness Consents, carers Shared care management Clinical letters and reports Notifications and alerts Audit and governance
  • 28. Commonly used fragments Generic Medical summary Medication, prescriptions planning Anticoagulation monitoring Cardiovascular cardiac Heart failure respiratory Disease management scales & scores Assessment self-care Dementia prescriptions Treatment effectiveness Consents, carers Shared care management Clinical letters and reports Notifications and alerts Audit and governance
  • 29. planning Indication for anticoagulation - {mandatory, ordinal, 15 specified conditions} Other indication - {optional, free text} Anticoagulant drug name - {mandatory, ordinal, 3 specified drugs} Target INR - {mandatory, quantity, range 0-5} Target INR range Upper - {mandatory, quantity} Lower - {mandatory, quantity} Intended end date - {optional, calendar date} ------------- one must If life-long treatment intended - {optional, Boolean} ------------- be provided Actual end date - {optional, calendar date} Precautions to be taken - {optional, free text} Anticoagulation monitoring
  • 30. planning monitoring Present health situation Treatment controller Current INR Decision support recommended warfarin dose If recommended dose accepted Actual warfarin dosage Decision support recommended monitoring interval If recommended interval accepted Actual appointment date Clinic name Advice given Medical comments Anticoagulation
  • 31.
  • 32.
  • 33.
  • 34.
  • 35.
  • 36.
  • 37. De facto archetype approach • Focus on the specific support of clinical shared care • Work with multiple professionals from the start • Develop archetypes with a view to what is feasible to record and useful to share • Archetypes mirror the data structures in real use • Build on existing paper and electronic systems if they are useful and used • Developed with rapid reflection back via clinical application screens and practice data entry • Diversity still needs to exist - clinical best practice might not always be at a consensus - yet!
  • 38. Best practice: published evidence, guidelines, international consensus, focus onand prescriptions completeness Medication maximal Treatment Advice and education Hypotheses, Symptoms Self management and health issues Chronic and history Prevention and home monitoring (problems disease and Conventional medical summary screening, diagnoses), Well-being and fitness, managemen population rehabilitation after illness Body physical risks t health examination findings Tests and investigations measures Care planning Social welfare, culture, religion, attitudes, De facto: expectations, hopes, fears existing operations Procedures and practice, existing systems, Protocols, guidelines, care pathways local consensus, Communication, team-based collaboration focus on supporting shared care Consent, permissions, disclosures, complaints
  • 39. Key challenges for successful clinical modelling • Semantic interoperability needs to be underpinned by shared clinical data structures: archetypes • Large scale, professionally-driven, archetype library development is now needed • Professionals will need better (ontology-driven) visuals to understand their archetype landscape • Rapid testing of models via clinical applications is vital • The quality labelling and publication of archetypes must be centrally co-ordinated within Europe • More research is needed on how SNOMED CT can help with semantic consistency across multiple archetypes
  • 40. Getting clinical engagement right • Involve a wide range of working clinicians • Develop archetypes with multi-professional input • Combine available evidence and consensus practice • Solve real clinical information gaps • join up virtual teams to improve safety and shared care • define the benefits right at the start • No need to structure everything • start by codifying the data that will improve care • remember narrative is good for human to human communication • Quality assure archetypes before they are used • Pilot in real settings before wide roll out