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The National Institute for Health Informatics What If We Never Agree On A Common Health Information Model? 2 Nov 2011, CTRU Research Seminar Koray Atalag, MD, PhD, FACHI

What if we never agree on a common health information model?

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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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Page 1: What if we never agree on a common health information model?

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

Page 2: What if we never agree on a common health information model?

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

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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!

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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.)

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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…

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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

Page 7: What if we never agree on a common health information model?

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

Page 8: What if we never agree on a common health information model?

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

Page 9: What if we never agree on a common health information model?

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

Page 10: What if we never agree on a common health information model?

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

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How do we model now?complex techy stuff

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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

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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)

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Multi-Level Modelling in openEHR

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Date and Time Handling in openEHR

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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

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Clinicians in the Driver’s Seat!

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Content Example:Blood Pressure Measurement

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Blood Pressure MeasurementMeta-Data

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Blood Pressure MeasurementData

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Blood Pressure MeasurementPatient State

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Blood Pressure MeasurementProtocol

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Open Source Archetype Editor

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Content Modelling in Action

Back in 2009 – GP view of BPWHAT HAVE WE MISSED?

Acknowledgement: Heather Leslie & Ian McNicoll

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Blood pressure: CKM review

Acknowledgement: Heather Leslie & Ian McNicoll

Page 27: What if we never agree on a common health information model?

Blood pressure: CKM review

Acknowledgement: Heather Leslie & Ian McNicoll

Page 28: What if we never agree on a common health information model?

…additional input from other clinical settings

Blood Pressure v2

Acknowledgement: Heather Leslie & Ian McNicoll

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…and researchers

Blood Pressure v3

Acknowledgement: Heather Leslie & Ian McNicoll

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CKM: Versioning

Acknowledgement: Heather Leslie & Ian McNicoll

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CKM: Discussions

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Blood pressure: Translation

Acknowledgement: Heather Leslie & Ian McNicoll

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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

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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

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A Simple Health InformationOrganisation

Compositions

EHR

Folders

Sections

Clusters

Elements

Data values

Entries

Page 36: What if we never agree on a common health information model?

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]

Page 37: What if we never agree on a common health information model?

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

Page 38: What if we never agree on a common health information model?

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

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Problem Archetype

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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

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NZ Interoperability Architectureis underpinned by openEHR

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Thanks... Questions?

[email protected]

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