Abstract
This paper identifies and analyses characteristics of Patients’ Online Communities (POC) in Sweden. The purpose of the paper is to increase our understanding of how individuals design online social support and how this can inform design in a wider perspective. The study presents a fine-grained picture of POC covering both the contextual structures and the community culture. Two important driving forces of POC (to get informed and to interact with others in similar situation) are identified. These serve as a basis for the introductory discussion provided on how the experiences from POC can serve as implications for the emergent design of Internet based communication between patients and health care providers.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Preview
Unable to display preview. Download preview PDF.
References
Ball, M.J. and Lillis, J. (2001) E-health: transforming the physician/patient relationship, International Journal of Medical Informatics, 61, 1–10.
Baym, N. (1995) The emergence of community in computer mediated communication. In S.G. Jones (Ed.), CyberSociety: Computer-mediated community and communication, pp. 138–163. Thousand Oaks; CA: Sage Publications.
Baym, N. (1998) The Emergence of On-Line Community. In S.G. Jones (Ed.), CyberSociety 2.0: Revisiting Computer-Mediated Communication and Community, pp. 35–68. Thousand Oaks; CA: Sage Publications.
Contractor, N., S. and Seibold, D., R. (1993) Theoretical Frameworks for the Study of Structuring Processes in Group Decision Support Systems. Human Communication Research, Vol 19, No 4, pp. 528–563.
Eysenbach, G. and Diepgen, T. (1999) Patients Looking for Information on the Internet and Seeking Teleadvice, Journal of American Medical Association 135, 151–156.
Ferguson, T. (2000) On-line patient-helpers and physicians working together: a new partnership for high quality health care, British Medical Journal 321: 1129–1132.
Ferguson, T. (2002) From patients to end users, British Medical Journal 324: 555–556.
Finn, J. (1999) An exploration of helping processes in an online self-help group focusing on issues of disability, Health and Social Work 24 (3), 220–231.
Hardey, M. (2001) `E-health’: The Internet and the transformation of patients into consumers and producers of health knowledge. Information, Communication and Society. Vol 4, No 3, pp. 388–405.
Haythornthwaite, C. and Wellman, B. (2002) The Internet in Everyday Life. An introduction. In B. Wellman and C. Haythornthwaite (Eds.) The Internet in Everyday Life. Malden, MA, USA: Blackwell Publishers Ltd.
Hellerstein, L. N. (1985) The social use of electronic communication at a major university. Computers and the Social Sciences, Vol 1, pp. 191–197.
Hollingshead, A., B. and McGrath, J., E. (1995) Computer-assisted groups: a critical review of the empirical research. In R.A. Guzzo and E. Salas (Eds.) Team effectiveness and decision making in organization, pp. 46–78. JosseyBass Publishers, San Francisco.
Josefsson, U. (2002) Internet as a Healthcare resource. Patients’ requirements for community building. In Proceedings of Information Systems Research in Scandinavia, IRIS 25, August 10–13, Bautahöj, Denmark.
Kahn, C.E. (2000) Design and implementation of an Internet-based health information resource, Computfer Methods and Programs in Biomedicine 63, 85–97.
Kollock, P. and Smith, M.A. (1999) Communities in Cyberspace, in M.A, Smith, and P. Kollock (Eds.) Communities in Cyberspace, pp. 3–25. Routledge, London.
Kummervold, P., E., Gammon, D., Bergvik, S., Johnsen, J-A., K., Hasvold, T., Rosenvinge, J. H. (2002) Social support in a wired world: use of online mental health forums in Norway. Nord J Psychiatry Vol. 56: 59–65.
Leimeister, J.M. Daum, M., Krcmar, H (2002) Mobile Virtual Healthcare Communities: An Approach to Community Engineering For Cancer Patients. In Proceedings of the Xth European Conference on Information Systems, ECIS, Wrycza, S. (Ed), pp. 1626–1637. GDansk/Danzig, Poland.
Madara, E. J. (1997) The mutual-aid self-help online revolution, Social Policy, Spring97, Vol. 27 (3), pp. 20–27.
Mittman, R. and Cain, M. (2001), The Future of the Internet in Health Care: A Five-Year Forecast in Rice, R.E. and Katz, J.E (eds) The Internet and Health Communication. Experiences and Expectation, Sage Publications, Thousand Oaks, pp 47–73.
Myers, D. (1987a) A new environment for communication play: On-line play. In G.A. Fine (Ed.), Meaningful play, playful meaning (pp. 231–245 ). Champaign, IL: Human Kinetics.
Myers, D. (1987b) “Anonymity is part of the magic”: Individual manipulation of computer-mediated communication contexts. Qualitative Sociology, Vol. 19, No. 3, pp. 251–266.
Mynatt, E., D., Adler, A., Ito, M., Linde, C., O’Day, V., L. (1999) The Network Communities of SeniorNet. In S. Bödker, M. Kyng and K. Schmidt (Eds.). Proceedings of the Sixth European Conference on Computer-Supported Cooperative Work, 12–16 September, Copenhagen, Denmark.
Preece, J. (1999) Empathic communities: Balancing emotional and factual communication. Interacting with Computers, The Interdisciplinary Journal of Human-Computer Interaction. 12, 1, 63–77.
Preece, J. (2000), Online Communities. Designing Usability, Supporting Sociability, John Wiley and sons, LTD, New York, USA.
Reeves, P. M. (2000) Coping in Cyberspace: The Impact of Internet Use on the Ability of HIV-Positive Individuals to Deal with Their Illness, Journal of Health communication, Vol. 5 (Supplement), pp. 47–59.
Reid, E. (1991) Electropolis: Communication and community on Internet Relay Chat. Unpublished Master’s thesis, University of Melbourne, Australia.
Reid, E. (1999) Hierarchy and power. Social control in cyberspace. In M. A. Smith and P. Kollock (Eds.), Communities in Cyberspace. London: Routledge.
Rice, R.E. (2001) The Internet and Health Communication: A Framework of Experiences, in R.E. Rice and J.E. Katz (eds.) The Internet and Health Communication. Experiences and Expectation, Sage Publications, Thousand Oaks.
Rice, R.E. and Katz, J.E. (2001) The Internet and Health Communication. Experiences and Expectation, Sage Publications, Thousand Oaks.
Siebold, D.R., Heller, M.A. and Contractor, N.S. (1994) Group decision support systems (GDSS): Review, taxonomy, and research agenda. In B. Kovacic (Ed.) New Approaches to Organizational Communication, pp. 143–168, Albany, State University of New York Press.
Sittig, D.F., King, S. and Hazelhurst, B.L. (2001), A survey of patient-provider email communication: what do patients think? International Journal of Medical Informatics 61 (1), 71–80.
Sveningsson, M. (2001) Creating a Sense of Community. Dissertation Linköping Studies in Arts and Science. No. 233.
Sweden Statistics (2001) IT at home and in the enterprise – a statistical descripti on of Sweden, Report from Statistics Sweden, 2001–01–31.
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2003 Springer Science+Business Media Dordrecht
About this paper
Cite this paper
Josefsson, U. (2003). Patients’ Online Communities Experiences of emergent Swedish self-help on the Internet. In: Huysman, M., Wenger, E., Wulf, V. (eds) Communities and Technologies. Springer, Dordrecht. https://doi.org/10.1007/978-94-017-0115-0_19
Download citation
DOI: https://doi.org/10.1007/978-94-017-0115-0_19
Publisher Name: Springer, Dordrecht
Print ISBN: 978-90-481-6418-9
Online ISBN: 978-94-017-0115-0
eBook Packages: Springer Book Archive