Towards the design of truly patient-centred healthcare infrastructures: A socio-technical approach to self-care

Health Informatics: An Adaptive Communication Technology for Future Healthcare

Volumn , Issue , 2012, Pages 135-172

  Storni, Cristiano ^a   Bannon, Liam J ^a  

^a UNIVERSITY OF LIMERICK   (Ireland)

Author keywords

Biomedical model; Infrastructure; Patient empowerment; Patient centred design.; Practice; Self care; Socio technical

Indexed keywords

EID: 84895313813     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Chapter

References (76)

1. Anderson, Robert M. and Funnell, Martha M., (2000) Compliance and Adherence are Dysfunctional Concepts in Diabetes Care, The Diabetes Educator, 26; 597
2. Hilary Arksey and Patricia Sloper (1999) Disputed diagnoses: the cases of RSI and childhood cancer, Social Science & Medicine, vol. 49, no. 4, pp. 483-497
3. Barbot, Janine (2006) How to build an "active'' patient? The work of AIDS associations in France, Social Science & Medicine 62 (2006) 538-551
4. Barry, Christine A., Bradley, Colin P., Britten, Nicky., Stevenson, Fione A., Barber, N. (2000) Patients'unvoiced agendas in general practice consultations: qualitative study, British Medical Journal, 320:1246-1250
5. Beisecker, Analee E. (1988). Aging and the desire for information and input in medical decisions: Patient consumerism in medical encounters, The Gerontologist, 28, 330-335
6. Berg, Marc (1999): Accumulating and Co-ordinating: Occasions for Information Technologies in Medical Work, Journal of Computer Supported Cooperative Work, vol. 8, pp. 373-401.
7. Berg, Marc and Timmermans, Stefan (2000), Orders and their Other: on the constitution of universalities in Medical Work, Configuration, vol. 8, 1, pp. 31-61
8. Borell, Merriley (1993) Training the senses, training the mind, in W.F. Bynum & R. Porter (eds), Medicine and the five senses. Cambridge, UK: Cambridge University Press, pp. 244-261.
9. Bowker, Geoffrey C. and Star, Susan L. (2000): Sorting Things Out: Classification and its Consequences, Cambridge, MIT press.
10. Britten, Nicky (1994) Patients' ideas about medicine: a qualitative study in a general practice population, British Journal of General Practice, 44, 465-468
11. Brown, Phil, McCormick, Sabrina, Mayer, Brian; Zavestoski, Stephen; Rachel Morello-Frosch, Rebecca Gasior Altman and Laura Senier, (2006) A Lab of Our Own": Environmental Causation of Breast Cancer and Challenges to the Dominant Epidemiological Paradigm, Science Technology Human Values, 31; 499
12. Brown, John S., Duguid, Paul (2000) The Social Life of Information, Boston: Harvard Business School Press
13. Cahill, Jack (1996) Patient participation: a concept analysis, Journal of advanced nursing, 24, pp. 561-71
14. Cahill, Jack (1998) Patient participation: a review of the literature, in Journal of Clinical Nursing, 7, 119-128
15. Callon, Micheal (1999) The Role of Lay People in the Production and Dissemination of Scientific Knowledge, Science Technology & Society, 4; 81
16. Callon, Michael, Lascoumes, Paul, Barthe, Yanic. (2009) Acting in an Uncertain World: An Essay on Technical Democracy, Cambridge, MIT press
17. Callon, Michael, and Rabeharisoa, Vololona (2003) research in the wild and the shaping of new social identities, in Technology in Society, Vol. 25, pp. 193-204
18. Ciborra Claudio, e Hanset, Hole (1999) From Tool to Gestell: Agendas for Managing the Information Infrastructure, Information, Technology and People, 11 (4): 305-327
19. Conrad, Peter (1985) The Meaning of Medications: Another Look at Compliance. Social Science and Medicine, vol. 20, pp. 29-37
20. Donovan Jenny L. and Blake, David R. (1992) Patient non-compliance: deviance or reasoned decision-making? Social Science Medicine, 34: 507-513.
21. Deveugele, Myriam, Anselm Derese, Atie van den Brink-Muinen, Jozien Bensing, Jan De Maeseneer (2002) Consultation length in general practice: cross sectional study in six European countries, British Medicine Journal 325:472.
22. Edwards, Paul N., Bowker, Geoffrey C., Jackson, Steven J., Williams, Robin (2009) Introduction: An Agenda for Infrastructure Studies, Journal of the Association of Information Systems, 10, Special Issue, pp. 364-374
23. Ellingsen, Gunnar and Monteiro, Eric (2006) Seamless Integration: Standardization across Multiple local settings, Journal of Computer Supported Cooperative Work, vol. 15, pp. 443-466
24. Foucault, Michael (1973) The Birth of the Clinic, London, Tavistock
25. Fitzpatrick, Geraldine (2004) Integrated care and the working record, Health Informatics Journal, vol. 10, pp. 291-304
26. Goguen, Joseph (2005) Support for Ontological Diversity and Evolution, short essay for the SEEK (Science Environment for Ecological Knowledge) project meeting, October 27. Available at: http://www.cs.ucsd.edu/users/goguen/papers/onto-intgn.html
27. Hanseth, Ole, Thoresen, Kari and Winner, Langdon (1993) The Politics of Networking Technology in Health Care, Journal of Computer Supported Cooperative Work, vol. 2, no. 2.
28. Hanseth, Ole and Braa, Christine (2001) Hunting for the treasure at the end of the rainbow: standardizing corporate IT infrastructures, Journal of Computer Supported Cooperative Work, vol 10, no. 3-4, pp. 261-292
29. Hanseth, Ole and Lundberg, Nina (2001) Design work oriented infrastructure, Journal of Computer Supported Cooperative Work, vol. 10, no. 3-4, pp. 347-372
30. Hardey, Michael (2001) E'Health: the internet and the transformation of patients into consumer and producers of Health Knowledge, Information, communication and society, 4(3): 388-40
31. Hartsock, Nancy, CM. (1998) The feminist standpoint revisited and other essays, Perseus Publishing
32. Heath, Christian (1992) The delivery and reception of diagnosis in the generalpractice consultation. In Drew, P. and Heritage, J. (eds) Talk at Work: Interaction in Institutional Settings, Cambridge: Cambridge University Press
33. Helman Cecil G. (1981) 'Tonic', 'fuel' and 'food': social and symbolic aspects of the long-term use of psychotropic drugs, Social Science Medicine, 15B: 521-533.
34. Hewison, Alistair 1995 Nurses' power in interactions with patients Journal of Advanced Nursing, vol. 21 no. 1, pp. 75-82
35. Jasanoff, Sheila (2003) Technology of Humility, in Minerva, 41, 223-244
36. Jirotka, Marina, Procter, Rob, Hartswood, Marc, Slack, Roger, Simpson, Andrew and Voss Alex (2005) Collaboration and Trust in Healthcare Innovation: The eDiaMoND Case study, Journal of Computer Supported Cooperative Work, vol. 14, pp. 369-398
37. Jones David R. (1979) Drugs and prescribing: what the patient thinks, Journal of general practice, 29, 417-419.
38. Kamel Boulos, Maged, N., and Wheelert, Steve (2007) The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education, Health Information and Libraries Journal, 24, 2-23
39. Knorr-Cetina, Karin, (1999) Epistemic Cultures: How the Sciences Make Knowledge. Harvard University Press, Cambridge
40. Kilbourn, Kyle (2008) The Patient as skilled practitioner. A design anthropology approach to enskilment in Health and Technology. PhD dissertation, Mads Clausen Institute for Product Innovation, University of Southern Denmark
41. Lachmund, Jens (1997) Der abgehorte Koerper, Zur historischen Soziologie der medizinischen Untersuchung, Westdeutscher, Verlag
42. Leder, Drew (1992) A tale of two bodies: The Cartesian corpse and the lived body, Leder, D. (ed), The Body in Medical Thought and Practice, Amsterdam: Kluwer Academic Publishers
43. Levenstein Joseph H., McCracken, Eric C., McWhinney, Ian, Steward, Moira A. and Brown, Judith B. (1986) The patient-centred clinical method: a model for the doctor-patient interaction in family medicine, Family Practice, 3:24-30
44. Nettleton, S and Burrows, R., (2003) E-Scaped Medicine? Information, Reflexivity and Health. Critical Social Policy, 23(2), 165-185
45. Martin, David, Hartwood, Mark, Slack Roger and Voss, Alex (2006) Achieving Dependability in the Configuration, Integration and testing of Healthcare Technologies, Journal of Computer Supported Cooperative Work, vol. 15, pp. 467-499
46. Macintyre, Sally and Oldman, David (1977) Coping with migraine. In Davis, A. and Horobin, G. (eds) Medical encounters: the experience of illness and treatment, London: Croom Helm
47. Morgan Myfanwy and Watkins C.J. (1988) Managing hypertension: beliefs and responses to medication among cultural groups. Social Health Illness, 10: 561-578.
48. Mol, Annamarie (2008) The logic of care and the problem of patient choice, London Routledge
49. Molzahn, Anita E. (1991) Quality of life after organ transplantation, Journal of advanced nursing, vol. 16, no. 9, pp. 1042-7
50. Morgan, Myfanwy and Watkins, Carol J. (1988) Managing hypertension: beliefs and responses to medication among cultural groups, Sociology of Health & Illness vol. 10, no. 4, pp. 561-578
51. Opie, Anne (1998) 'Nobody asked me for my view': Users' empowerment by multidisciplinary health teams, Qualitative health research, vol. 8, no. 2, pp.188-206
52. Osterberg, Lars and Blaschke, Terrence (2005) Adherence to medication, New England Journal of Medicine, 353(5), 487-97
53. Pinelle, David and Gutwin, Carl (2006) Loose coupling and Health Care organizations, Journal of Computer Supported Cooperative Work, vol. 15, no. 5-6, pp. 537-572
54. Pipek, Volkmar and Wulf, Volker (2009) Infrastructuring: toward an integrated perspective on the design and use of Information Technology, Journal of the association of Information systems, vol. 10, Special Issue, pp. 447-473
55. Procter, Rob, Rouncefield, Mark, Balka, Hellen and Berg, Marc (2006) Special Issue: CSCW ad Dependable Healthcare Systems, Journal of Computer Supported Cooperative Work, vol. 15, pp. 413-418
56. Paterson, Barbara (2001) The myth of patient empowerment in chronic illness, Journal of advance nursing 34(5), 574-581
57. Pilnick, Alison (1998) 'Why didn't you say just that?' Dealing with issue of asymmetry, knowledge and competence in the pharmacist/client encounter, Sociology of Health and Illness, 20(1), 29-51
58. Preece, Jenny (1998) Empatic communities: reaching out across the web, in Interaction, march+april
59. Rabeharisoa, Vololona and Callon, Michael (1998) The participation of patients in the process of production of knowledge: the case of the french muscular distrophies association, Sciences Sociales et Santé, vol. 16, 3, pp. 41
60. Rabeharisoa, Vololona and Callon, Micheal (2002) The involvement of patients' associations in research, International Social Science Journal, Vol. 54, 171, pp. 57-63
61. Rabeharisoa. Vololona, Callon. Michael (2004) Patients and scientists French muscular dystrophy research, in Jasanoff, S. (ed.), States of knowledge, London
62. Routledge Radley, Alan (1994) Making Sense of Illness: The Social Psychology of Health and Disease. London: Sage
63. Reddy, Madhu C., Dourish, Paul and Pratt, Wanda (2006) Temporality in Medical Work: Time also Matters, Journal Computer Supported Cooperative Work, vol. 15, pp. 29-53
64. Ribes, David and Finholt, Thimas, A. (2009) The long now of technology infrastructure: articulating tensions in development, Journal of the association of Information systems, 10, Special Issue, pp. 376-398
65. Roberson, Mildred H. B. (1992), The Meaning of Compliance: Patient Perspectives, Qualitative Health Research, Vol. 2, No. 1, 7-26
66. Schneider, Karin and Wagner, Ina (1993): Constructing the 'Dossier Représentatif': Computer-Based Information Sharing in French Hospitals, Journal of Computer Supported Cooperative Work, vol. 2, no. 1, pp. 229-253
67. Schmidt, Kield and Simone, Carla (1996): Coordination Mechanisms: Towards a Conceptual Foundation of CSCW Systems Design, Journal of Computer Supported Cooperative Work, 5:155-
68. Star, Susan L. (1999) 'The Ethnography of Infrastructure', American Behavioral Scientist 43: 377-91.
69. Star, Susan L. and Ruhleder, Karen (1996) Steps Towards an Ecology of Infrastructure: Design and Access for Large Information Spaces, Information Systems Research, vol. 7, no. 1, pp. 111-134.
70. Star, Susan L. and Bowker, Geoffrey (2002)-How to infrastructure," in Lievrouw L. A. and Livingstone, S. (Eds.) Handbook of New Media-Social Shaping and Consequences of ICTs, London, SAGE, pp. 151-162.
71. Suchman, Lucy (1994) Do categories have politics? Journal of Computer supported cooperative work, vol. 2, no. 3, pp. 177-190
72. Turner, Bryan S. (1987) Medical Power and Social Knowledge, London, Sage
73. Turner, William, Bowker, Geoffrey, Gasser, Les and Zackland Manuel (2006) Information Infrastructure for distributed collective practices, Journal of Computer Supported Cooperative Work, Vol. 15, Special issue 2-3, pp. 93-110
74. Ure, Jenny, Hartswood, Mark, Wardlaw, Joanna, Procter, Rob, Anderson, Stuart, Gonzalez-Velez, Horacio, Lin, Yu-wei, Lloyd, Sharon, Ho, Kate (2009) The development of data infrastructure of e-Health: a sociotechnical perspective, Journal of the association of Information systems, 10, Special Issue, pp. 415-429
75. Verbeek-Heida Piet M. (1992) How patients look at drug therapy: consequences for therapy negotiations in medical consultations. Family Practice, 10: 326-329.
76. Winthereik, Brit R. and Vikkelso, Signe (2005) ICT and Integrated Care: Some dilemmas of standardising Inter-Organisational Communication, Journal of Computer Supported Cooperative Work, vol. 14, pp. 42-67