“Perhaps the biggest single misconception about virtual communities is that they can be created.” (Shafer,2 1999)
As this quote exemplifies, skepticism exists as to whether it is possible to systematically create a Virtual Community (VC). Community building, characterized by the systematic design, implementation, and operation of a VC, challenges this position. This article describes the assessment of a systematically designed, implemented, and operated VC for cancer patients on the German-speaking Internet. We evaluate the underlying design elements and success factors of the VC by measuring user acceptance and usage of the site, as well as the existence of trust among users. The current analysis is based on previous work on the systematic and user-orientated design of the Virtual Community krebsgemeinschaft.de (Arnold, Leimeister, & Krcmar, 2003; Leimeister, 2004; Leimeister, Daum, & Krcmar, 2002).
After a brief description of the potentials of VCs and the circumstances of patients in Germany, we outline the potential benefits of a VC for this user group. We then summarize the central design elements as well as the specific characteristics of these elements for the case of krebsgemeinschaft.de. Based on this, the acceptance and utility of the site are evaluated. The article concludes with the implications of the findings for the chosen design approach as well as for community-building in general.
Potentials of VCs for Patients
The Internet is changing the way people access health-related information and how they search for support and interaction with peers in similar situations. According to the Pew Internet and Life Project, by 2002 more than 73 million U.S. citizens had searched for health-related information on the web (Fox & Fallows, 2003). Health information is one of the most important and fastest growing content areas on the Internet. Similar findings are being reported from Europe (Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, 2004).
In traditional healthcare systems, existing information services are commonly bound to specific opening hours. Further, information gathering requires the physical presence of the patient or a family member. Another source of information for patients and families is conventional support groups. The usefulness of obtaining information through participation in a self-help group is also dependent on the information seekers' ability to be physically present at a designated place at a designated time. Internet services, however, are not restrictive in this way and are therefore especially appealing to those who will not or can not leave their home for any number of reasons.
Online communities can be very promising and fruitful for patients seeking information, support, and the opportunity to network with persons in similar situations. VCs can free patients from time and space constraints. The information-related potentials of VCs include up-to-date information, anonymity of information usage, and needs-based coverage of patient information demands. Additional benefits include aspects related to interactivity, such as empathy among peers and the consequent empowerment of patients through VCs.
Information on the Internet can often be more timely than that available through other forms of media. Given the importance of health-related information and the amounts of information being continually generated, the Internet has a crucial advantage over other media forms, especially print publications. New research findings and current developments are available much faster through the Internet. In terms of lay information and communication, it is generally assumed that there is a higher degree of openness among people interacting via the Internet than in face-to-face situations. This openness, especially concerning difficult topics such as life-threatening diseases or taboo themes, has been attributed to the anonymity of Internet users (Döring, 2003). A quote from Anja Forbiger (2001), herself a cancer survivor, illustrates this point: “It is not easy for me to speak about the problem [of] cancer. The more anonymous internet is a great help.”
The fit between information supply and demand can also be better on the Internet, as users can compose single modules according to their personal wishes or needs. They can, for example, decide on which topic they want to be informed about and at which point in time. From a supply standpoint, the requirements for the presentation of information on the Internet are different from those applied to information presented in print format.
The Internet, with all its different services, offers possibilities for multilateral interaction. The Internet integrates a feedback channel and provides collaborative mass communication where each user can simultaneously be the sender and the receiver of information (Döring, 2003; Rafaeli & LaRose, 1993).
Interaction within a VC can promote empathy among members (Preece, 1999, 2000) as well as an emotional integration into a community of peers. Empathy can be characterized by three criteria (Levenson & Ruef, 1992, p. 234): a) knowing how the other person feels; b) feeling what another person feels; and c) answering/acting according to this feeling for the misery/woe of the other person. The development of a sense of community is considered a fundamental ingredient of a working VC (Blanchard & Markus, 2002) and it is often based on the existence of empathy among the members.
The interaction among members generates an information pool of high credibility since it is built upon members' often extensive experience (Peppers & Rogers, 1997; Schubert, 1999). The existence of such VCs can lead to an information asymmetry in favour of the members and contribute to the empowerment of patients. By joining forces the members of a VC might reach a higher market power (Lechner & Schmid, 2001; Schubert, 1999) and thus improve the situation for patients in the healthcare system.
In order to be able to design a VC for patients systematically, it is important to understand the circumstances of cancer patients and their specific needs. In the following, we summarize some relevant aspects (for further details see Leimeister, 2004; Leimeister et al., 2002).