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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?