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

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.