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1
The gap between consumer health concepts and professional
medical terminology.
George Karystianis
Controlled vocabularies for consumer health.
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Health Consumerism• Patient’s information
search about his health wellness.
• Personal responsibility.
• Partners in their own health care.
• Dramatic rise in the U.S.
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Factors
Internet
Government legislation
HIPAA privacyrule
Mandatoryaccess
Online accessPatient input
Informationsources
Interactive toolsOnline support
Groups etc
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Barriers to health consumerism (1)
• Terminology-explicit terms.• Only medical terms available for search.
– National Library of Medicine: 225,000 queries.– 84% unmatched to UMLS metathesaurus.
• Medical terminology difficult to understand.• Low literacy = low health literacy.
– 249 patients, 79% not recognize bleeding/hemorrhage, 78% broken/fractured bone, 74% heart attack/myocardial infarction [Lerner et al 2000].
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Barriers to health consumerism (2)
• Internet.• Too much information.
– Misinformation (incomplete, false, wrong).– Multiple opinions, confusion.– Wrong decisions.
• Severe consequences (adverse drug events, misdiagnosis, treatment etc).
• Patient access/participation in health care not supported by current technologies.
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Outcomes• Avoid contact with health
professionals. • Printouts to the
professionals.• Participation in their
health care.• Possible reduction of
medical errors.• Possible confusion.• Possible arguments.
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Challenges• How can patients correct their medical records
without understanding?
• How can patients speak about matters which are beyond the limits of medical terminology?
• How can clinicians understand lay terms about the consumer’s concepts?
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ExamplePatient Clinician
Diabetes??
What we’ve got here..is
failure to communicat
e
Oh..you meandiabetes
Duh! Of courseNot!
“Sugar”
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“The collection of common health expressions, concepts,
explanatory models, attitudes and beliefs shared
by most members of a consumer discourse group”
[Zeng et al 2006]
Consumer health vocabularies (CHV) (1)
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Consumer health vocabularies (2)
• Identification of consumer terms.• “Translation” into the professional medical
language.• Mapping to equivalent terms contained in
professional medical vocabularies.• Assumption:
– Both sides are referring to the same concept.• Research focused in the consumer terms.
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Obstacles for the implementation of CHV
• Misspelling, partial words, variations in spelling of economic conditions.– Client language has greater variability.– Client language has regional variations.
• Variety of future users (based on age, region, education) broad the problem.
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Case 1-Exact match
UMLS
Consumer
Term: Pain Term: PainConcept
Professional terminology
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Case 2-Lay synonym
UMLS
Consumer
Term: Nosebleed Term: EpistaxisConcept
Professional terminology
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Case 3-Different use of the same term
UMLS
Consumer
Term: Leg
Professional terminology
Term: Lower extremity
The part of the lower limp betweenthe knee and the
ankle The entirelower limp
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Case 4-no match
• Concept can not be mapped manually or automatically.
• Need to be entered in professional terminologies as new concepts.
• Challenge:– Link unmapped terms to existing concepts through
semantic relations.
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Case 4-no match
DomainLay nature Semantic type
Nearest related UMLS conceptPostcoordination
Unmapped terms
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Examples• Consumer entry vocabulary for health care
communications.• DARE (Dictionary of American English).
– 23% coverage for consumer terms.• Development of a terminology server for Medline
Plus (National Library of Medicine).– search engine accepting errors.
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Examples (2)
PersonalHealth
Terminology
DistributedTerminology
System
ConsumerHealth
Terminology
IntelligentMedical Objects
MultidisciplinaryTeam Apelon
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Suggestions• Informal language for medical procedures and
concepts.• Nursing informatics.
– “the integration of data, information and knowledge to support patients, nurses and other providers in their decision making in all roles and settings.”
• Nurses with informatics expertise.– concept representation.– development structured vocabularies.– bridge the gap between medical and consumer
terminologies.
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Suggestions (2)
• Multidisciplinary effort.– nurses, linguists and medical librarians,
patients from various backgrounds.• Systematic review of consumer used
terms.• Understand of what each consumer
concept stands for.
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Conclusions• Certain consumer terms can not be mapped.• Variation in expression and dialect will increase.• Bridging technology is needed.• Terminology servers implementation.• Structured consumer vocabularies.• Nursing informatics.• Multidisciplinary effort.
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Bibliography
Qing Zeng-Treitler PHD, Sergey Goryachev MS, Hyeoneui Kim RN
PHD, Alla Keselman PHD, Douglas Rosendale MD (2007) Making Texts in
electronic Health Records Comprehensible to Consumers: A
Prototype Translator.
Alla Keselman, PhD, MA, Catherine Arnott Smith, PhD, Guy Divita, MS, Hyeoneui
Kim, PhD, Allen G. Browne, MA, Gondy Leroy, PhD, Qing Zeng-Treitler,
PhD (2008) Consumer Health Concepts That Do Not Map to the
UMLS: Where Do They Fit?14
Rita D.Zielstorff (2003) Controlled vocabularies for consumer health.
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Questions?