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«Abstract. Virtual Communities (VCs) offer ubiquitous access to information and exchange possibilities for people in similar situations. This is ...»

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Please quote as: Leimeister, J. M. & Krcmar, H. (2005): Evaluation of a systematic

design for a virtual patient community. In: Journal of Computer-Mediated

Communication (JCMC), Ausgabe/Number: 4, Vol. 10, Erscheinungsjahr/Year: 2005.



Author: Jan Marco Leimeister, Helmut Krcmar

Affiliation: Information Systems (I 17), Technische Universität München Email addresses: {leimeister; krcmar}@in.tum.de Abstract. Virtual Communities (VCs) offer ubiquitous access to information and exchange possibilities for people in similar situations. This is especially valuable for patients with chronic / life-threatening diseases as they have strong needs for information and interaction with peers. It is seldom considered possible to create VCs systematically. Grounded on previous findings, systematic design of the VC krebsgemeinschaft.de (a VC for cancer patients in the German speaking internet) this article describes the evaluation of the design elements and factors which contributed to the VCs success by assessing user acceptance and usage of the site. Additionally, the existence of trust (a constituent element of working VCs) in krebsgemeinschaft.de is addressed. Based on these criteria we verify empirically the chosen design components and generate insights as to the systematic development and operation of VCs in general and for VCs for patients in the German healthcare system in particular.

Keywords: Virtual Community, patients, community-building, evaluation, community design.

1 Introduction1 „Perhaps the biggest single misconception about virtual communities is that they can be created” (Shafer2 1999) 1 This paper is a substantially revised and extended version of (Leimeister/Krcmar 2005).

2 Dan Shafer, former senior co-editor of the Online Community Report, founder of WeTalk Network and two Online Communities: Salon.com's Table Talk and CNet Networks Inc.'s Builder.com in an interview with Computerworld in As this quote exemplifies, scepticism exists as to whether or not 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 assertion. This article describes the assessment of a systematically designed, implemented and operated VC for cancer patients in the German speaking internet. We evaluate the underlying design elements and success factors by measuring user acceptance and usage of the site as well as the existence of trust among users in the VC. The current analysis is based on preceding 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 situation of patients in Germany we outline the potential benefits of a VC for this user group. We then summarise 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 paper concludes with the implications of the findings for the chosen design approach as well as for community-building in general.

2 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 US-citizens have searched for health-related information on the web. Health information is one of the most important and fastest growing subjects in the internet. Similar findings are being reported from Europe.

In the traditional healthcare system, existing information services are commonly bound to specific opening hours. Further, information gathering requires the physical presence of the patient or 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 physically be 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.

For these groups of people, 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 barriers. Information-related potentials of VCs include up-to-datedness of information, anonymity of information usage and needs-based coverage of patient information demands. Additional benefits include the interactivity-related aspects such as empathy among peers and consequently the empowerment of patients through VCs.

December 1999.

2.1 Information-related potentials The up-to-datedness of information in the internet can often be more timely compared to other forms of media. Considering 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 can be presumed 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 lifethreatening diseases or taboo themes has been attributed to the anonymity existing between users of the internet (Döring 2003). A quote from Anja Forbringer, herself a cancer survivor, illustrates this point: „It is not easy for me to speak about the »problem cancer«. The more anonymous internet is a great help”.

The fit between information supply and demand can be much higher on the internet as the user can compose single modules according to his personal wishes or needs. He/she can, for example, decide on which topic he/she wants to be informed and at which point in time. From a supply standpoint, it is important to remember that the requirements for the presentation of information on the internet are different than those applied to information presented in print format.

2.2 Interactivity-related potentials The internet with its different services offers multi-lateral interaction possibilities. The internet integrates a feedback channel and provides collaborative mass communication where all users can simultaneously be the sender and receiver of information (Döring 2003, S. 41f.) (Rafaeli/LaRose 1993).

Interaction within a VC can promote empathy between members (1999; 2000; 2001) as well as an emotional integration into a community of peers. Empathy can be characterized by three criteria (Levenson/Ruef 1992, S. 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 between members generates an information-pool of high credibility since it is built upon the often extensive experience of members (Schubert 1999, S. 100, Peppers/Rogers 1997, S. 244). The existence of such VCs can lead to an information asymmetry in favour of the members and contribute to the empowerment of patients. The members of a VC might reach a higher market potential and simultaneously a higher market power (Lechner/Schmid 2001) (Schubert 1999, S. 99) for patients in the healthcare system.

In order to be able to design a VC for patients systematically, it is important to understand the situation of cancer patients and their specific needs. Following we summarise some relevant aspects (further details see also Leimeister/Daum/Krcmar, 2002 and Leimeister, 2004).

3 General conditions and circumstances for cancer patients Cancer is the second most frequent cause of death in Germany. Approximately 338000 people are newly affected every year (Deutsche Krebshilfe 2003). Astonishing, until 2001 almost no information or interaction sites for cancer patients could be found on the German-speaking internet (Daum et al. 2001). Starting there, a community for patients with cancer was developed, introduced, and operated within the COSMOS3 -research project.

3.1 Needs of cancer patients The diagnosis “cancer” hits most patients completely unprepared. The often tedious treatmentcycles dominate the daily routine and life-planning of the affected persons. Due to crucial changes in every day, prospectives and priorities change. Provoked by the life-threatening diagnosis, the patient often falls into a psychological crisis. This kind of crisis causes a strong demand for sense-making processes concerning the new situation (Madara 1997).

In order to better cope with a diagnosis of cancer, patients and family members need information on what cancer exactly implies. But this search for information is only one part of the coping-process. Besides the longing for knowledge there can also be a demand for understanding and emotional support from other similarly affected persons. Furthermore, the wish for interaction and communication with peers can emerge as research on coping mechanisms of cancer patients has shown (see e.g. (Leydon, G. M.et al 2000)).

3.1.1 Information needs

Cancer patients often have a high demand for information, especially after diagnosis or during therapy (Bilodeau/Degner 1996; Brockopp et al. 1989; Derdiarian 1987; Hinds/Streater/Mood 1995; McCaughan/Thompson 1995; Mills/Sullivan 1999). This demand can result from any number of circumstances but may be caused by an asymmetric distribution of information between physician and patient.

The type of information mainly requested has been shown by recent research on the characteristics of the demands of cancer patients. Kaminski et al. (2001) for example identified a strong interest in information from various areas e.g. effects of cancer on other areas of life such as work, family or sexuality (for similar findings see (Bilodeau/Degner 1996; Leydon et al. 2000;

McCaughan/Thompson 1995; Shuyler/Knight 2003)). Attending physicians are not often able to satisfy patient requests for information. Survey research on patients and self-help groups as well as analyses of patient requests to medical service providers (Bahrs/Klingenberg 1995; Hiller 2001; Ruprecht 1998) have shown that patients are not only interested in medical competence in the classical sense, but to a great extent in communication and a human dealing with the individual problems of the single patient (Hiller 2001). Mutual acceptance, more emotional care, empathy, holistic treatment as well as higher quality and better cooperation between the various 3 The research project COSMOS (Community Online Services and Mobile Solutions) is a joint project of the Technische Universität München and O2 (Germany) GmbH & Co. OHG. The project is supported by the Ministry of Education and Research FKZ 01 HW 0107 –0110. Further information can be found under http://www.cosmos-community.org health care professions involved in the treatment process are mentioned as potential fields for improvement.

3.1.2 Demand for interaction When dealing with affected persons, one can often feel their inner wish for empathy and interpersonal interaction. Interaction with people with the same background/disease can play an important role for patients (Forbiger 2001). Their demands are not restricted to attaining pure facts, but also include a need to communicate first hand experiences which are derived from experienced symptoms and interpreted for their individual situation (c.f. (Ferber 1987;

Mills/Sullivan 1999; Moeller 1996; SEKIS 2000)). In order to cope with the new situation or to discuss treatment possibilities, the affected person needs one or more interlocutors. There exists an intense interest in similar cases and experiences of others (Bilodeau/Degner 1996; Lieberman et al. 2003; Manaszewicz/Williamson/McKemmish 2002).

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