Abstract
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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
A description of the health system in Italy and in the Province of Trento would obviously be beyond the scope of this study. As an anonymous reviewer suggested, such a description accompanied by comparison “with (e.g.) American or British practice would be very valuable. Indeed, such a comparison would be the basis of a very useful paper in its own right”. We agree with the reviewer and consequently restrict ourt treatment to the information given in the main text concerning health data management. The central component of Italian healthcare is the public health service, which is universalist and furnishes all medical services at flat-rate costs. Paying the same tariffs, patients can choose to use the services of private subcontracting healthcare facilities.
Nothing better than the austere bureaucratic language of an appointment receipt conveys the idea of the patient’s role in Italy: “Present yourself with the prescription [issued by the general practitioner], any previous clinical documentation (haematochemical analyses, reports on specialist and/or instrumental examinations) as well as the medicines in use and the provincial health card”. This standard formula evinces the salient features of the public health system of the region in question: access to specialist treatment (the main source of clinical documents) requires a prescription issued by a general practitioner; it is conditional on enrolment with the regional public health system (testified by possession of the card); and the patient must furnish the requisite information by taking all previous documentation to the appointment. This requirement is obviously most frequent when a patient’s therapeutic needs require treatment by diverse experts, while it diminishes when an illness only requires periodic check-ups with a single doctor. In this latter case, the doctor will have a copy of all that is necessary for management of the patient.
We use this label here to denote the technology as it commonly used in the field. However, ‘Personally-Controlled Health Record’ would be more appropriate because it emphasises the role of the patient’s control over the record. The two labels are nevertheless substantially equivalent (Eysenbach 2008).
While current debate is dominated by the US it is worth noting that PHR attracted also the early interest European scholars (e.g. Iakovidis 1998).
This oft-cited article is of great importance because it summarizes the findings of the 2005 Symposium of the American College of Medical Informatics on the development prospects of PHR models.
As rightly pointed out by an anonymous reviewer, all infrastructural work is invisible to those who are not involved in it; hence the administrative work of managing medical documentation in institutional settings is invisible to patients. The latter, however, is considered work in every effect by the healthcare institution, while the domestic paperwork of patients is “personal health-care personal behavior” (Moen and Brennan 2005: 649), and is considered such by the patients themselves.
Recent studies on telemedical applications have demonstrated that their use causes unintended and unpredictable forms of work redistribution among not only medical personnel (Cartwright 2000; Mort et al. 2003) but also between doctors and patients (Oudshoorn 2008). We do not expect that this or any other preliminary analysis can foresee what will be the activities to be supported once the system has been implemented and widely adopted.
The aim of project, as indicated by its name, is to furnish a service to all citizens. In the text, we would have liked to use the expression ‘citizen/patient’, the purpose being to highlight that this is a universalist service to all citizens. Nevertheless, the design process, as is obvious, has privileged the category of citizens that can derive most benefit from it, namely patients. For this reason, and so as not to encumber the text, we have preferred always to use the term ‘patient’.
During the interviews we were able to verify that the interviewees had not in fact set their medical documents in order. Many of the them reported their surprise at finding medical documents which they thought they had lost or, sometimes, other objects/documents that had ended up by mistake among the medical documentation. In many cases the interview was an occasion for respondents to discard from their files prescriptions never used, examination results become outdated and useless, brochures, newspaper clippings, and even the business cards or telephone numbers of doctors whom they had no intention of contacting again.
A further aspect—the emotional dimension of paper documents—was examined upon suggestion by the anonymous reviewers.
References
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.
Baillie, L., & Benyon, D. (2008). Place and technology in the home. Journal of Computer Supported Cooperative Work, an International Journal, 17(2–3), 227–256.
Bowker, G. C. (1997). Lest we remember: organizational forgetting and the production of knowledge. Accounting, Management and Information Technology, 7(3), 113–138.
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.
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.
Bury, M. (2001). Illness narratives: fact or fiction? Sociology of Health and Illness, 23, 263–285.
Cartwright, L. (2000). Reach out and heal someone: telemedicine and the globalization of health care. Health, 4(3), 347–377.
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.
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.
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.
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.
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.
Ellingsen, G., & Monteiro, E. (2006). Seamless integration: Standardisation across multiple local settings. Computer Supported Cooperative Work, an International Journal, 15(5–6), 443–466.
Eysenbach, G. (2000). Consumer health informatics. British Medical Journal, 320(7251), 1713–1716.
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.
Gerhardt, U. (1989). Ideas about illness: An intellectual and political history of medical sociology. London: Macmillan.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Publishing Company.
Halamka, J. D., Mandl, K. D., & Tang, P. C. (2008). Early experiences with personal health records. Journal of the American Medical Informatics Association, 15(1), 1–7.
Hartswood, M., Rouncefield, M., Procter, R., & Slack, R. (2003). Making a case in medical work: implications for the electronic medical record. Computer Supported Cooperative Work, an International Journal, 12(3), 241–266.
Hess, R., Bryce, C. L., Paone, S., Fischer, G., McTigue, K. M., Olshansky, E., et al. (2007). Exploring challenges and potentials of personal health records in diabetes self-management: implementation and initial assessment. Telemedicine and e-Health, 13(5), 509–518.
Iakovidis, I. (1998). Towards personal health record: current situation, obstacles and trends in implementation of electronic healthcare record in Europe. International Journal of Medical Informatics, 52(1), 105–115.
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.
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).
Moen, A., & Brennan, P. F. (2005). Health@Home: The work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations. Journal of American Medical informatics Association, 12(6), 648–656.
Mort, M., May, C., & Williams, T. (2003). Remote doctors and absent patients: acting at a distance in telemedicine? Science Technology & Human Values, 28(2), 274–295.
Oudshoorn, N. (2008). Diagnosis at a distance: the invisible work of patients and healthcare professionals in cardiac telemonitoring technology. Sociology of Health & Illness, 30(2), 272–288.
Østerlund, C. S. (2008). Documents in place: demarcating places for collaboration in healthcare settings. Computer Supported Cooperative Work, an International Journal, 17(2–3), 195–225.
Porter, R. (1997). The greatest benefit to mankind: A medical history of humanity from antiquity to the present. London: Harper Collins.
Schein, E. H. (1984). Coming to a new awareness of organizational culture. Sloan Management Review, 25, 3–17.
Schmidt, K., & Bannon, L. (1992). Taking CSCW seriously: supporting articulation work. Computer Supported Cooperative Work, an International Journal, 1(1), 7–40.
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.
Star, S. L., & Strauss, A. (1999). Layers of silence, arenas of voice: the ecology of visible and invisible work. Computer Supported Cooperative Work, an International Journal, 8, 9–30.
Strauss, A. (1985). Work and the division of labour. The Sociological Quarterly, 26(1), 1–19.
Suchman, L. (1995). Making work visible. Communication of the ACM, 38, 56–68.
Tang, P. C., Ash, J. S., Bates, D. W., Marc Overhage, J., & Sands, D. Z. (2006). Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. Journal of American Medical Informatics Association, 13(2), 121–126.
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.
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.
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.
Winthereik, B. R., & Vikkelsø, S. (2005). ICT and integrated care: some dilemmas of standardising inter-organisational communication. Computer Supported Cooperative Work, an International Journal, 14(1), 43–67.
Acknowledgements
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.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Piras, E.M., Zanutto, A. Prescriptions, X-rays and Grocery Lists. Designing a Personal Health Record to Support (The Invisible Work Of) Health Information Management in the Household. Comput Supported Coop Work 19, 585–613 (2010). https://doi.org/10.1007/s10606-010-9128-5
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10606-010-9128-5