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In this talk I will touch on some hard problems in health informatics around working with structured data and why we can’t link and reuse them with ease. The essence of the problem is that, while clinicians can perfectly understand each other, IT systems can’t. Traditional IT requires formally defined common terminology, meta-data, data and process definitions. While Medicine is mostly accepted as positive science, yet the great variation in the body of knowledge and practice is often seen as ‘Art’. Ignoring this bit, IT people tend to develop all-inclusive common information models (almost always too complex to implement) and expect everybody adhere to that. Clinicians love to do things a bit differently and of course don’t buy into that! Maybe they are right! Maybe we don’t have to agree on a uniform model at all. This is the basic assumption of the openEHR methodology which I will describe by giving clinical examples. The main premise of this approach is to effectively separate tasks of healthcare and technical professionals. Clinicians can easily define their information needs as they like using visual tools – called Archetypes which are essentially maximal data sets. These computable artefacts, built using a well defined set of technical building blocks, are then fed into the technical environment to integrate data or develop software. Lastly the free web based openEHR Clinical Knowledge Manager portal provides collaborative Archetype development and ensures semantic consistency among different models.
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The National Institutefor Health InnovationInformatics
What If We Never Agree On A Common Health Information Model?
2 Nov 2011, CTRU Research Seminar
Koray Atalag, MD, PhD, FACHI
A look at clinical communication
• Clinicians usually understand each other when conveying information about patients, studies etc.
• Perhaps because:– Communication is a natural phenomenon– Common language (common training, experience, culture,
goals, universality of Medicine)– Moral responsibility, drive for success, money etc.
• It is a seamless human thing - involves greatest computer of all times – the Brain!
• We still don’t have a clue how this happens though
What’s the problem with IT here?
• We capture heaps of healthcare data - sit in silos• Partly structured and coded – depends on purpose
– eg ICD10, ICD-O, LOINC• Coding is not easy
– depends on context, purpose, or just coder’s mood!• Still wealth of valuable information in free text• Difficult to code from free text after capturing
– Usually context is lost• Ultimately we cannot link, share and reuse!
What are the implications?
• Apart from:– safety, quality, effectiveness and equity in healthcare– New knowledge discovery and advances in Science
• Cost of not sharing health information:– in the US could sum up to a net value of $77.8 billion/yr
(Walker J. The Value Of Health Care Information Exchange And Interoperability. Health Affairs 2005 Jan)
– In Australia well over AUD 2 billion(Sprivulis, P., Walker, J., Johnston, D. et al., "The Economic Benefits of Health Information Exchange Interoperability for Australia," Australian Health Review, Nov. 2007 31(4):531–39.)
If the banks can do it, why can’t health?
• Clinical data is wicked:– Breadth, depth and complexity
• >600,000 concepts, 1.2m relationships in SNOMED
– Variability of practice– Diversity in concepts and language– Conflicting evidence– Long term coverage– Links to others (e.g. family)– Peculiarities in privacy and security– Medico-legal issues– It IS critical…
Wickedness: Medication timing
Dose frequency Examplesevery time period …every 4 hours
n times per time period …three times per day
n per time period …2 per day…6 per week
every time period range
…every 4-6 hours, …2-3 times per day
Maximum interval …not less than every 8 hours
Maximum per time period
…to a maximum of 4 times per day
Acknowledgement: Sam Heard
Wickedness: Medication timing
Time specific ExamplesMorning and/or lunch and/or evening
…take after breakfast and lunch
Specific times of day 06:00, 12:00, 20:00
Dose durationTime period …via a syringe driver
over 4 hours
Acknowledgement: Sam Heard
Wickedness: Medication timing
Event related ExamplesAfter/Before event …after meals
…before lying down…after each loose stool…after each nappy change
n time period before/after event
…3 days before travel
Duration n time period before/after event
…on days 5-10 after menstruation begins
Acknowledgement: Sam Heard
Wickedness: Medication timing
Treatment duration
Examples
Date/time to date/time 1-7 January 2005
Now and then repeat after n time period/s
…start, repeat in 14 days
n time period/s …for 5 days
n doses …Take every 2 hours for 5 doses
Acknowledgement: Sam Heard
Wickedness: Medication timing
Triggers/Outcomes
Examples
If condition is true …if pulse is greater than 80 …until bleeding stops
Start event …Start 3 days before travel
Finish event …Apply daily until day 21 of menstrual cycle
Acknowledgement: Sam Heard
How do we model now?complex techy stuff
A new approach:
Open source specifications for representing health information and person-centric records– Based on 18+ years of international implementation experience
including Good European Health Record Project– Superset of ISO/CEN 13606 EHR standard
Not-for-profit organisation - established in 2001 www.openEHR.org
Extensively used in research Separation of clinical
and technical worlds• Big international community
Key Innovations
• “Multi-level Modelling”– separation of health information representation into layers
1) Reference Model: Technical building blocks (generic)
2) Content Model: Archetypes & Templates (domain-specific)
3) Terminology: ICD, CDISC/CDASH, SNOMED etc.
Data exchange and software based on only the first layerArchetypes provide ‘semantics’ for mapping and GUI formsTerminology provides linkage to knowledge sources (e.g.
Publications, knowledge bases, ontologies)
Multi-Level Modelling in openEHR
Date and Time Handling in openEHR
Archetypes: Blueprints of Health Information
• Puts together RM building blocks to define clinically meaningful information (e.g. Blood pressure)
• Configures RM blocks• Structural constraints (List, table, tree)• What labels can be used• What data types can be used• What values are allowed for these data types• How many times a data item can exist?• Whether a particular data item is mandatory• Whether a selection is involved from a number of items/values
• They are maximal datasets–contain every possible item• Modelled by domain experts using visual tools
Clinicians in the Driver’s Seat!
Content Example:Blood Pressure Measurement
Blood Pressure MeasurementMeta-Data
Blood Pressure MeasurementData
Blood Pressure MeasurementPatient State
Blood Pressure MeasurementProtocol
Open Source Archetype Editor
Content Modelling in Action
Back in 2009 – GP view of BPWHAT HAVE WE MISSED?
Acknowledgement: Heather Leslie & Ian McNicoll
Blood pressure: CKM review
Acknowledgement: Heather Leslie & Ian McNicoll
Blood pressure: CKM review
Acknowledgement: Heather Leslie & Ian McNicoll
…additional input from other clinical settings
Blood Pressure v2
Acknowledgement: Heather Leslie & Ian McNicoll
…and researchers
Blood Pressure v3
Acknowledgement: Heather Leslie & Ian McNicoll
CKM: Versioning
Acknowledgement: Heather Leslie & Ian McNicoll
CKM: Discussions
Blood pressure: Translation
Acknowledgement: Heather Leslie & Ian McNicoll
How do they all fit together?(to share and reuse data)
• Common RM blocks ensure data compatibility– No need for type conversions, enumerations, coding etc.
• Common Archetypes ensure semantic consistency– when a data exchange contains blood pressure
measurement data or lab result etc. it is guaranteed to mean the same thing.
– Additional consistency through terminology linkage• Common health information patterns and
organisation provide ‘canonical’ representation– All similar bits of information go into right buckets
• Addresses provenance and medico-legal issues
Patterns in Health Information
Actions
Published evidence base
Personal knowledge
Evaluation
Observations
Subject
Instructions Investigator’s agents
(e.g. Nurses, technicians, other physicians or automated devices)
Clinicianmeasurable or
observable
clinically interpreted findings
order or initiation of a workflow process
Recording data for each activity
Administrative Entry
A Simple Health InformationOrganisation
Compositions
EHR
Folders
Sections
Clusters
Elements
Data values
Entries
Achievable?
• 4̴ 10-20 archetypes core clinical information to ‘save a life’
• 4̴ 100 archetypes primary care
• 4̴ 2000 archetypes secondary care– [compared to >600,000 concepts
in SNOMED]
Achievable? 2
• Initial core clinical content is common to all disciplines and will be re-used by other specialist colleges and groups– Online archetype consensus in CKM– Achieved in weeks/archetype– Minimises need for F2F meetings– Multiple archetype reviews run in parallel
• Leverage existing and ongoing international work
Acknowledgement: Sam Heard
Can clinicians agree on single definitions of concepts?
• “What is a heart attack?”– “5 clinicians, potentially >1 answer” – probably more!
• “What is an issue vs. problem vs. diagnosis?”– No consensus for conceptual definition for years!
BUT• There is generally agreement on the structure and
attributes of information to be captured Problem/Diagnosis
name Status Date of initial onset Age at initial onset Severity Clinical description
Date clinically recognised
Anatomical location Aetiology Occurrences Exacerbations Related problems
Date of Resolution Age at resolution Diagnostic criteria
Acknowledgement: Sam Heard
Problem Archetype
Who’s using it for research?
• The Victorian Cancer Council– Transformed all their research data over the last 20 years
to an openEHR repository• SINTERO Project
– Wellcome Trust funded – at Cardiff Univ.– Gather data for diabetes from patients, devices and
hospital records– openEHR based repository to aggregate and query data
NZ Interoperability Architectureis underpinned by openEHR
Thanks... Questions?
If you are really interested in Health Informatics,consider attending HINZ. This year's annual conference is in
Auckland 23-25 November
http://www.hinz.org.nz/page/conference