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

2. October 2, 20152 Polar icecap

3. October 2, 20153

4. “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? October 2, 20154

5. 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 October 2, 20155

6. 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 October 2, 20156

7. SNOMED CT - History 1964:Systematic Nomenclature of Pathology 1972-75:Redeveloped as SNOMED 2000:SNOMED RT (Reference Terms) 2002:SNOMED + Read Codes v3 = SNOMED CT 2007:SNOMED CT acquired by IHTSDO Some anomalies, but now widely used October 2, 20157

8. 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 October 2, 20158

9. 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) October 2, 20159

10. 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 October 2, 201510

11. 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; or 3.Model citizens’ language games; develop and maintain a consumer terminology. October 2, 201511

12. 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? October 2, 201512

13. 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 October 2, 201513

14. 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 October 2, 201514

15. 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 October 2, 201515

16. 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 October 2, 201516

17. 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. October 2, 201517

18. October 2, 2015 18 Questions?