1 O pen G ALEN CO-ODE/HyOntUse Making Terminologies useful and usable: Making Terminologies useful and usable: Clinical Terminologies in the 21 Clinical Terminologies in the 21 st st Century: Century: What are they for? What might they look like? What are they for? What might they look like? Alan Rector Alan Rector Bio and Health Informatics Forum/ Bio and Health Informatics Forum/ Medical Informatics Group Medical Informatics Group Department of Computer Science Department of Computer Science University of Manchester University of Manchester [email protected][email protected]www.cs.man.ac.uk/mig img.man.ac.uk www.cs.man.ac.uk/mig img.man.ac.uk www.clinical-escience.org www.clinical-escience.org mygrid.man.ac.uk mygrid.man.ac.uk
Making Terminologies useful and usable: Clinical Terminologies in the 21 st Century: What are they for? What might they look like?. Alan Rector Bio and Health Informatics Forum/ Medical Informatics Group Department of Computer Science University of Manchester - PowerPoint PPT Presentation
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1O p en G A L E N CO-ODE/HyOntUse
Making Terminologies useful and usable:Making Terminologies useful and usable:Clinical Terminologies in the 21Clinical Terminologies in the 21stst Century: Century:
What are they for? What might they look like?What are they for? What might they look like?
Alan RectorAlan Rector
Bio and Health Informatics Forum/Bio and Health Informatics Forum/Medical Informatics GroupMedical Informatics Group
Department of Computer ScienceDepartment of Computer ScienceUniversity of ManchesterUniversity of Manchester
“On those remote pages it is written that animals are divided into:
a. those that belong to the Emperor b. embalmed ones c. those that are trained d. suckling pigse. mermaids f. fabulous ones g. stray dogs h. those that are included in this classificationi. those that tremble as if they were mad j. innumerable ones k. those drawn with a very fine camel's hair brush l. others m. those that have just broken a flower vase n. those that resemble flies from a distance"
From The Celestial Emporium of Benevolent Knowledge, Borges
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But why in healthcare?But why in healthcare?
• What’s it for? What’s the purpose?– Terminologies are of little use in
themselves• How will it make care better? new things
possible?• How will it make information systems better?
– Painful experience of 20 years of over-selling and under performance
• Do we need it: Clinically? Technically?– If we need it
• what is ‘it’? Is ‘it’ one thing or many?• How will we know if we have ‘it’?• How will we know if ‘it’ is fit for purpose
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Why Now?Why Now?
• What’s different now?– Web, E-Science, Grids
• Web speed• New technologies – OWL, new DLs, hybrid frame-DL
environments www.semanticweb.org
– Post genomic medicine – personalised medicine• Joining up Healthcare Medical and Bioscience research –
• Clinical quality – do users put in the right things? – Repeatability of information captue (inter rater
reliability)• For decision support in prospective use• For retrieval in retrospective use
– Salience • Relevance to clinical decisions for prospective use• Significance to questions for retrospective use
– A better measue than “coverage”
• Logical quality – do systems give the right responses? – Correct organisation (classification)
• Correct inferences given correct input
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Hypothesis 1Hypothesis 1
• Most computer oriented terminology development ignores clinical quality …– The EHR as black hole
• Bigger is not necessarily better
…although clinical quality was the primary concern of traditional paper/human oriented terminologies(and there are honourable exceptions – e,g, ICPC).
– Evidence: High variability in recorded use Systematic failure to use data from GP systems in clinical studies (despite PRIMIS) Our own & colleagues’ experience in repeated studies Current planned cost of cohort ‘post genomic’ studies
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Three modelsThree models
• Meaning - ontologies– Can I depend on the answers?
• “Dyspnoea is a respiratory problem”
• Clinical significance – decision support– What should I think of / how does it affect
decisions• “Dyspnoea can be a symptom of congestive heart
failure”
• Model of use – EHR/human factors– Is what I want ‘to hand’ – is it ‘handy’?”
• “Dyspnoea should be a question on a cardiac history”
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Hypothesis 2Hypothesis 2
• Early terminologies emphasised models of use and significance and failed for lack of model of meaning– “Heart diseases” are in 13 Chapters of ICD9
• Recent terminologies emphasise model of meaning and fail for lack of models of use and significance– Evidence:
• User dissatisfaction, non-use, and poor quality data• The few systems based on models of use have been
surprisingly popular with doctors, e.g. MedCin, ORCA– But hard to use for retrieval
• We have fewer formal models of use than of meaning– We have almost no models of ‘significance’
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Grounding cost vs Clean-up costGrounding cost vs Clean-up cost(with thanks to Enrico Coiera)(with thanks to Enrico Coiera)
• “Grounding cost”– The cost of establishing a given quality
of communication• How much French do you need to order a
meal?
• “Clean up cost”– The cost of fixing miscommunication
• How many surprises will you accept? of what kind?
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Special purpose vs Re-usable Special purpose vs Re-usable MultipurposeMultipurpose
• Special purpose terminologies– Almost all retrospective
• Reporting for remuneration – ICD9-CM, CPT• Reporting for epidemiology - ICD10, OPCS
• Multipurpose re-usable terminologies – Aspire to be the glue for ‘Patient centred
systems’ & ‘Personalised Medicine’• Decision support• Electronic Health Records• Research • Integration with Bioscience• …
– But too often ‘multipurpose’ means ‘no purpose’ ‘multiapplication’ means ‘no application’
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Need “Multipurpose” mean “no Need “Multipurpose” mean “no purpose”?purpose”?
• Multiple purposes held by multiple groups – Multiple sources of expertise & authority
• One size does not fit all
– Multiple collaborations• Multiple legacies
• Multiple purposes use multiple applications– Applications are the point of interaction
• Applications make needs concrete & testable
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Multipurpose means interacting with Multipurpose means interacting with othersothers
It’s a big open world out there…It’s a big open world out there…• Bioscience
– Gene Ontology, National Cancer Institute Center for Bioinformatics (NCICB), The Digital Anatomist/ Mouse Anatomy/Mammalian Anatomy, BioJava,PRINTS, EMBL, Microarrays, Protemoics, Metabalomics, Systems Biology…
• Medicine meets bioscience– Cancer therapeutics, New imaging, …
• E-Health: sharing and pooling data: Collections based research”– BioBank, NTRAC, NCRI, NCTR, CLEF, …– “Health Intelligence”– MRC policy on data sharing– …
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Hypothesis 3Hypothesis 3
• Grounding costs can be delimited for special purpose terminologies
• Grounding costs are indefinite for re-usable terminologies (& is historically high)– Without purposes testable through
applications there– Danger of the escalating deadly embrace
• “Must have terminology to build applications; but Must have applications before terminology”
– Evolutionary approach the only exit
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Central Control vs Central Control vs Open managed evolutionOpen managed evolution
• Académie française vs Oxford English Dictionary– Scholasticism vs Empiricism
• The ‘arrogance of the a prior’People don’t know what they do
• Look to see what is actually used» Language technology shows time and again
that our predictions are faulty
– Command economy vs Social Market
• Participation is the issue rather than money– Somebody will still have to pay
• But at least they might pay for something useful
• “Grounding costs” high / “Clean up costs” low?– must have everything before you can do
anything
• Change slow & lockstep
• A product
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Open managed evolutionOpen managed evolution
• “Owned” by the community – multiple “authorities”
• Coupling loose/ autonomy high / participation high– To be useful & usable involve users using systems
• “Grounding costs” low / “Clean up costs” high?– “Just in time” “Just enough”
• Agree where it counts
• Change quick and local - “threaded with annealing”
– A process
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Hypotheses 4Hypotheses 4a) Single purpose clinical terminologies can be best
managed centrally– By definition are developed in conjunction with an
application
b) Re-usable terminologies can only succeed by open managed evolution– Many purposes require many contributors
• Evidence: Speed of uptake of HL7/LOINC W3C & the evolution of the Web
c) Re-usable terminologies can only be developed in open collaboration with applications– Otherwise “multipurpose” become “no purpose”
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Hypothesis 5Hypothesis 5
• Modern technology provides the means to support open managed evolution without compromising clinical quality or technical stability– Trade lower grounding cost for greater clean up
cost– Focus on minimal stable core. Defer
commitments.• Evidence: OpenGALEN, Gene Ontology
– Utilise Web/Grid technologies for rapid dissemination and coordination
• Evidence: Current developments at Mayo clinic using LDAP
– Distribute terminology like domain names
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The technologiesThe technologies• Applications centric development
Decoupled development– Special purpose languages / “Intermediate Representations”
• Deferred commitment• Clinical before technical
• Logic based ontologies + – Models of clinical significance– Models of clinical use– Models of EHRs
• Web services & Grid technology – Authentication/authorisation/accounting– Distributed directories & LDAP– Service discovery
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Decoupled development using Decoupled development using “Conceptual Lego”“Conceptual Lego”
• If we manage the connectors and the pieces the users can build most things for themselves– Without compromising quality
• V31.22 Occupant of three-wheeled motor vehicle injured in collision with pedal cycle, person on outside of vehicle, nontraffic accident, while working for income
– and meanwhile elsewhere in ICD-10• W65.40 Drowning and submersion while in bath-tub, street
and highway, while engaged in sports activity
• X35.44 Victim of volcanic eruption, street and highway, while resting, sleeping, eating or engaging in other vital activities
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The Cost: Normalising (untangling) The Cost: Normalising (untangling) OntologiesOntologies
StructureFunction
Part-wholeStructure Function
Part-w
hole
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The Cost: Normalising (untangling) The Cost: Normalising (untangling) OntologiesOntologies
Making each meaning explicit and separateMaking each meaning explicit and separatePhysSubstance Protein ProteinHormone Insulin Enzyme Steroid SteroidHormone Hormone ProteinHormone^ Insulin^ SteroidHormone^ Catalyst Enzyme^
… Substance BodySubstance Protein Insulin Steroid …
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But none of it works without But none of it works without toolstools
None of it works without None of it works without communication & cooperationcommunication & cooperation
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Communicating software Communicating software environments environments “Environments” rather than “Environments” rather than
“servers”“servers”
• Clinical users - care and review – Environments for entering& retrieving information– Methodologies for measuring and monitoring quality of
information– Human factors, language technology, fractal tailoring to
needs
• Application developers– Configuration tools – much more than “terminology servers”
• The key to success
• Ontology authors– Tools for distributed loosely coupled authoring
• Ontology managers (the “gurus”)– Tools for reconciliation, change management, &
meta-authoring of templates
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Summary of ArgumentsSummary of Arguments• The priorities are clinical needs supported by applications
supported by terminology– Unless they serve clinical needs, applications are useless– Unless they serve applications, terminologies are useless– Unless used reliably, terminologies are meaningless
“Meaning is a social construct”
Clinical quality should be our watchword
• Useful and usable to: clinical users, developers, ‘reviewers’, authors– Requires models of use & clinical significance– Requires tools and environments
• In an open evolving world, open managed evolution is the only plausible way forward– Participation and control are the issues – not money
• Current technology gives us the opportunity to cope– If we let development follow need
• If we use them to the full– 19th century methods won’t cope with 21st century problems
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Making Terminologies useful and usable:Making Terminologies useful and usable:Clinical Terminologies in the 21Clinical Terminologies in the 21stst Century: Century:
What are they for? What might they look like?What are they for? What might they look like?
Alan RectorAlan Rector
Bio and Health Informatics Forum/Bio and Health Informatics Forum/Medical Informatics GroupMedical Informatics Group
Department of Computer ScienceDepartment of Computer ScienceUniversity of ManchesterUniversity of Manchester