Constructing the digital patient: Patient organizations and the development of health websites

Abstract

In order to understand the constraints and challenges of realizing the democratic potentials of the Internet, this paper focuses on the attempts of three Dutch patient organizations to develop health websites. The authors describe how these patient organizations had to overcome specific barriers to develop their digital services. All three organizations faced certain constraints that had negative consequences for the plans they wanted to realize. Lack of financial resources and manpower were the main reasons why these patient organizations could not develop interactive parts of their website or provide personal advice services. Other barriers the patient organizations had to overcome were getting access to digital expertise to build the websites. The paper shows that the development of a website is a very demanding task, even for patient organizations that have in-house expertise with computers and Internet. Moreover, the paper shows that patient organizations do not consider the involvement of patients as crucial for the design of health websites. This research thus confirms previous research findings that users, in this case patients, are largely absent from the design process of information and communication technologies Finally, the paper shows how patient organizations' websites contribute to a redefinition of the patient from being a passive actor towards one who is an active participant in his or her care.

Keywords:

• Patient organizations
• health websites
• user-centered design
• active patient models
• patient identities

Acknowledgements

The authors would like to thank Onno Elzinga, Ali van Geleuken, Bianca Smits, Tom van der Wal and Jan Wassenaar for their detailed accounts of their experiences in developing the digital services of their organizations, and Lisette Bastiaansen and Renske Boersma for sharing their experiences with the Zon-MW project.

Notes

1. To be sure, we do not suggest that all patient organizations face similar financial barriers. Patient organizations funded by larger charities, particularly in the areas of cancer and heart disease, are often well funded and have developed websites with high hit rates.

2. The navigation structure of a website comprises the way in which the individual pages are ordered and the linkages between them. This structure provides the route to assess the information provided on the different pages.

3. Our analysis of the website is based on the version of the website that was available on 6 January 2003.

4. Although the logbook function is frequently used, the number of people using this function is rather low.

5. In contrast to the other two organizations, the RSI Patient Organization had already launched a website which it considered to be ‘not professional’ (interview, Wassenaar 2002).

6. The use of the Shift key required for capital letters is considered to be problematic for RSI patients.

7. As Barbot (2006) has described, most patient organizations that were initiated in the 1950s, 1960s and 1970s restricted their activities to improving the everyday situation of patients and focused their attention on the psychosocial aspects of diseases. According to Barbot, this distribution of roles was first criticized in the early 1980s when patient collectives began to include active involvement with medical knowledge and research in their agendas.

Additional information

Notes on contributors

Nelly Oudshoorn

Nelly Oudshoorn is Professor of Science and Technology Studies at the University of Twente in the Netherlands. She is the author of Beyond the Natural Body. An Archeology of Sex Hormones (Routledge, 1994) and The Male Pill: A Biography of a Technology in the Making (Duke University Press, 2003), and co-editor of Bodies of Technology: Women's Involvement with Reproductive Technologies (Ohio University Press, 2000) and How Users Matter: The Co-construction of Users and Technologies (MIT Press, 2003).

Andre Somers

Andre Somers is a Master's student at the Centre for Studies of Science, Technology and Society at the University of Twente, the Netherlands