Prescriptions, X-rays and Grocery Lists. Designing a Personal Health Record to Support (The Invisible Work Of) Health Information Management in the Household
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For many years the introduction of Electronic Health Records (EHRs) in medical practice has been considered the best way to provide efficient document sharing among different organizational settings. The actual results of these technologies, though, do not seem to have matched expectations. The issue of document sharing has been lately readdressed by proposing the creation of patient-controlled information and communication technologies, Personal Health Records (PHRs), providing laypeople the tools to access, manage and share their health information electronically by connecting to the existing EHRs and other institutional information systems. In this scenario, patients are called to play a major role in coordinating healthcare professionals by providing them the information they need. From a CSCW perspective the PHR offers an interesting case to reflect on cooperative work that requires new infrastructures that intersect organizational settings and extend into domestic environments. So far though, there has not been enough research to shed light on the self-care activities carried out in the households and how these integrate with the organizational practices of doctors and institutions. Our analyses show that health record keeping is an articulation work necessary for meetings with doctors to proceed smoothly. To do so, people integrate the information contained in medical documents by working on them with annotations, underlinings and integrations. Moreover, we show that health record keeping is a spatialized activity that is inextricably interwoven with the everyday routine and objects. Finally, we provide a tentative classification of three different strategies laypeople use to sort out health records: minimum effort, adaptive, networking.
KeywordsPersonal health record Healthcare infrastructures Health record management Invisible work Self-care Qualitative research Electronic health record
The present article is a totally collaborative effort by two authors. If, however, for academic reason individual responsibility is to be assigned, Enrico Maria Piras wrote Introduction, paragraph 3, 5 and the conclusions; Alberto Zanutto wrote paragraph 2, 4, 6.
This work is a part of a larger research project funded by the Department of Health and Social Politics of the Autonomous Province of Trento (Italy). The authors would like to thank all the members of the e-Health unit of Fondazione Bruno Kessler for the discussions and comments that helped us to narrow the focus of our research. A special thank goes to the participants of the workshop “Infrastructures for Healthcare” (Copenhagen 18–19 June 2009) for the feedbacks to the presentation of an early version of this work and to the three anonymous reviewer for their comments and suggestions.
- Akrich, M. (1992). The de-scription of technical objects. In W. Bijker & J. Law (Eds.), Shaping technology, building society: Studies in sociotechnical change (pp. 205–224). Cambridge: MIT Press.Google Scholar
- Bowker, G. C. (1997). Lest we remember: organizational forgetting and the production of knowledge. Accounting, Management and Information Technology, 7(3), 113–138.Google Scholar
- Brennan, P. F., & Kwiatkowski, K. (2003). How do lay people manage health information in the home? In E. Marques (Ed.), Proceedings, 8th International Congress in Nursing Informatics. New York: Elsevier.Google Scholar
- Bruni, A. (2003). La socialità degli oggetti e la materialità dell’organizzare: etnografia di un progetto di telemedicina. PhD dissertation, Dipartimento di Sociologia e Ricerca Sociale, Università degli Studi di Trento.Google Scholar
- Cartwright, L. (2000). Reach out and heal someone: telemedicine and the globalization of health care. Health, 4(3), 347–377.Google Scholar
- Civan, Andrea, Meredith M. Skeels, Anna Stolyar, and Wanda Pratt (2006): Personal Health Information Management: Consumers’ Perspectives; Proceedings of the American Medical Informatics Association, Fall Symposium (AMIA ’06), November 2006. Washington, D.C, pp. 156–160.Google Scholar
- Czarniawska-Joerges, B., & Joerges, B. (1990). Linguistic artifacts at service of organizational control. In P. Gagliardi (Ed.), Symbols and artifacts. Views of the corporate landscape (pp. 339–364). Berlin: de Gruyter.Google Scholar
- Denton, I. C. (2001). Will patients use electronic personal health records? Responses from a real-life experience. Journal of Healthcare Information Management, 15(3), 251–259.Google Scholar
- Dick, R. S., Steen, E. B., & Detmer, D. E. (Eds.). (1997). The computer based patient record: An essential technology for health care. Washington: Institute of Medicine, National Academy Press.Google Scholar
- Ellingsen, G. (2003). Coordinating work in hospitals through a global tool: implications for the implementation of electronic patient records in hospitals. Scandinavian Journal of Information Systems, 15(1), 39–54.Google Scholar
- Ellingsen, G., & Monteiro, E. (2006). Seamless integration: Standardisation across multiple local settings. Computer Supported Cooperative Work, an International Journal, 15(5–6), 443–466.Google Scholar
- Eysenbach, G. (2008). Medicine 2.0: Social networking, collaboration, participation, apomediation, and openness. Journal of Medical Internet Research, 10(3), available at http://www.jmir.org/2008/3/e22/ accessed 10/04/2009.
- Gunter, T. D., & Terry, N. P. (2005). The emergence of national electronic health record architectures in the United States and Australia: models, costs, and questions. Journal of Medical Internet Research, 7(1), available at http://www.jmir.org/2005/1/e3/ accessed 01/05/2008.
- Feero, W. G., Bigley, M. B., & Brinner, K. M. (2008). The family health history multi-stakeholder workgroup of the american health new standards and enhanced utility for family health history information in the electronic health record: an update from the american health information community’s family health history multi-stakeholder workgroup. Journal of the American Medical Informatics Association, 15(6), 723–728.CrossRefGoogle Scholar
- Gerhardt, U. (1989). Ideas about illness: An intellectual and political history of medical sociology. London: Macmillan.Google Scholar
- Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing Company.Google Scholar
- Leonard, K. J., Casselman, M., & Wiljer, D. (2008). Who will demand access to their personal health record? A focus on the users of health services and what they want. Healthcare Quarterly, 11(1), 92–96.Google Scholar
- Markle Foundation (2003). Connecting for Health. The personal health working group. Final report. Available at http://www.connectingforhealth.org/resources/final_phwg_report1.pdf, accessed 01/05/2008).
- Porter, R. (1997). The greatest benefit to mankind: A medical history of humanity from antiquity to the present. London: Harper Collins.Google Scholar
- Schein, E. H. (1984). Coming to a new awareness of organizational culture. Sloan Management Review, 25, 3–17.Google Scholar
- Star, S. L. (1991). The sociology of the invisible: The primacy of work in the writings of Anselm Strauss. In D. Maines (Ed.), Social organization and social processes: Essays in honour of Anselm Strauss (pp. 265–283). New York: Aldine de Gruyter.Google Scholar
- Thompson, T. G., & Brailer, D. J. (2004). The decade of health information technology: delivering consumer-centric and information-rich health care, Framework for Strategic Action. Available at http://www.longwoods.com/view.php?aid=17076 accessed 10/10/2009.
- Unruh, K. T., & Pratt, W. (2008). The invisible work of being a patient and implications for health care: “[the doctor is] my business partner in the most important business in my life, staying alive”. Ethnographic Praxis in Industry Conference Proceedings, pp. 40–50.Google Scholar
- Vikkelsø, S. (2005). Subtle reorganization of work, attention and risks: electronic patient records and organizational consequences. Scandinavian Journal of Information Systems, 17(1), 3–30.Google Scholar
- Winkelman, W. J., Leonard, K. J., & Rossos, P. G. (2005). Patient-perceived usefulness of online electronic medical records: employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness. Journal of the American Medical Informatics Association, 12(3), 306–314.CrossRefGoogle Scholar