Language Games and Patient-centred eHealth Chris SHOWELL, Elizabeth CUMMINGS and Paul TURNER eHealth Services Research Group, CIS University of Tasmania.

Language Games and Patient-centred eHealth

Chris SHOWELL, Elizabeth CUMMINGS and Paul TURNER

eHealth Services Research Group, CIS University of Tasmania

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Polar icecapPolar icecap

Polar icecapPolar icecap

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“Language games”

• Wittgenstein (2001):specialised use of language within interest groups

• Not “playing games with language”• Language games shape ICTs• SNOMED based on medical language games• What about citizens’ language games?

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Health ICTs

• Hospital finance, accounting, administration• “Point” solutions (eg labs, pharmacy)• Affordable systems in family practice• Administrative: language games of business• Clinical: medical language games • Shared records require interoperability• Common local, national, global terminologies

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Health terminologies

• Terminologies can improve:Precision, reuse, communication

BUT

• They colour meaning; promote a worldview• Doesn’t matter for finance and administration• Doesn’t matter much for separate systems• Matters a lot for integrated EHRs

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SNOMED CT - History

1964: Systematic Nomenclature of Pathology1972-75: Redeveloped as SNOMED2000: SNOMED RT (Reference Terms)2002: SNOMED + Read Codes v3 = SNOMED CT2007: SNOMED CT acquired by IHTSDO

Some anomalies, but now widely used

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Medical language

• Conceptualisations are biased; depend on:– Purpose behind their creation; and– World view of the designer (McCray 2006)

• SNOMED reflects the language game and worldview of medicine

• Specialised language protects expertise• Patient terms mapped as concepts, but still a

medical gaze

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Language, visibility and control

• Language shapes how we see the world• Things not described “cease to exist”• Special language inhibits participation

“social iatrogenesis...is at work when...the language in which people could experience their bodies is turned into bureaucratic gobbledegook” (Illich 1982)

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Role of the citizen• Solutions to healthcare “in crisis”:– Have citizens reduce health-damaging behaviours– Transfer care to the community (including homes)– Support the frail well to live longer at home– Engage patients as partners their own care

• Patient as a passive recipient of care; or• An active member of the treating team

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Citizens’ language

• Consideration in ICTs as an afterthought• Three approaches to consumer terminology:

1. Mould patients’ use of medical language;2. Map their terms to clinical equivalents; or3. Model citizens’ language games; develop and

maintain a consumer terminology.

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Mould

• Frames patient language as substandard• ED patients asked to match pairs of terms

(Lerner et al (2000))• Patients don’t understand medical terminology;

Worse for the young and uneducated• Is the consumer the problem?• Or is specialised language not fit for purpose?

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Map

• Map patients’ terms to clinical terms - Brennan and Aronson (2003), Zielstorff (2003)

• No consideration of semantic framework• No suggestion that patient terminology

warranted further study

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Model

• No systematic work on consumer health vocabularies (CHVs) (Zheng and Tse (2006)

• Need to develop CHVs for information seeking, understanding and retrieval by consumers

• Propose concept mapping between CHVs and professional terminology to develop a “first generation” CHV

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Citizen language

• Citizens use obscene or childish terms in place of anatomical equivalents (Smith 2007)

• Developers must choose between (what exists) and prescription (what “should” be used)

• The lived experience of illness is real• Citizens will express it using their own

worldview, language and terminology

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Conclusion

• Need to include the patient as a member of the treating team (Berwick (2003))

• Baby boomers will expect more autonomy, involvement and choice

• SNOMED-CT is a great clinical knowledge tool • Patient centered eHealth systems must

incorporate a citizens’ terminology

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References• Berwick D.M., Escape fire, John Wiley and Sons, 2003.• Brennan P.F. and Aronson A.R., “Towards linking patients and clinical information: detecting

UMLS concepts in e-mail,” Journal of Biomedical Informatics, vol. 36, 2003, pp. 334–341.• Illich I., Medical Nemesis, Pantheon, 1982.• Lerner E.B., Jehle D.V., Janicke D.M., and Moscati R.M., “Medical communication: Do our patients

understand?,” American Journal of Emergency Medicine, vol. 18, Nov. 2000.• McCray A.T., “Conceptualizing the world: Lessons from history,” Journal of Biomedical

Informatics, vol. 39, Jun. 2006, pp. 267-273.• Smith C.A., “Nursery, gutter, or anatomy class? Obscene expression in consumer health,” vol.

2007,2007, pp. 676-680. • Wittgenstein L., Tractatus Logico-Philosophicus, Routledge, 2001.• Zeng Q.T. and Tse T., “Exploring and Developing Consumer Health Vocabularies,” Journal of the

American Medical Informatics Association, vol. 13, Jan. 2006, pp. 24-29• Zielstorff R.D., “Controlled vocabularies for consumer health,” Journal of biomedical informatics,

vol. 36, 2003, pp. 326–333.

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Questions?