Evaluation of a Systematic Design for a Virtual Patient Community


  • Jan Marco Leimeister,

    Corresponding author
    1. A senior researcher and Assistant Professor in Information Systems at Technische Universitaet Muenchen (TUM), Munich, Germany. He is responsible for the Ubiquitous Commerce & Ubiquitous Applications Research Group and supervises several company and publicly funded research projects. His research interests are virtual communities, information management, IT adoption and IT usage, and ubiquitous/mobile computing in various application areas.
    • Address: TUM - Technische Universität München, Wirtschaftsinformatik (I17) / Information Systems, Boltzmannstr. 3, D 85748 Garching bei München, Germany

      Address: Technische Universität München, Lehrstuhl für Wirtschaftsinformatik (I17) / Chair for Information Systems, Boltzmannstr. 3, D 85748 Garching bei München, Germany

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  • Helmut Krcmar

    Corresponding author
    1. The Chair for Information Systems at the Department of Informatics, Technische Universitaet Muenchen, in Munich, Germany. His research interests include Information and Knowledge Management, IT-enabled Value webs, Service Management, Computer Supported Cooperative Work, and Information Systems in Health Care and eGovernment.
    • Address: TUM - Technische Universität München, Wirtschaftsinformatik (I17) / Information Systems, Boltzmannstr. 3, D 85748 Garching bei München, Germany

      Address: Technische Universität München, Lehrstuhl für Wirtschaftsinformatik (I17) / Chair for Information Systems, Boltzmannstr. 3, D 85748 Garching bei München, Germany

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Virtual Communities (VCs) offer ubiquitous access to information and exchange possibilities for people in similar situations, which is especially valuable for patients with chronic / life-threatening diseases. However, it is seldom considered possible to create VCs systematically. This article describes the evaluation of the design elements and factors that contributed to the success of the VC krebsgemeinschaft.de (a VC for cancer patients in the German-speaking internet), by assessing user acceptance and usage. Additionally, the existence of trust (a constituent element of working VCs) in krebsgemeinschaft.de is addressed. Based on these criteria, we empirically verify the chosen design components and generate insights into the systematic development and operation of VCs in general and VCs for patients in the German healthcare system in particular.


“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-Related Potentials

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.

Interactivity-Related Potentials

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).

General Conditions and Circumstances for Cancer Patients

Cancer is the second most frequent cause of death in Germany. Approximately 338,000 people are newly affected every year (Deutsche Krebshilfe, 2003). Astonishingly, until 2001 almost no information or interactive sites for cancer patients could be found on the German-speaking Internet (Daum, Klein, Leimeister, & Krcmar, 2001). At that time, a community for patients with cancer was developed, introduced, and operated within the COSMOS3 research project.

Needs of Cancer Patients

The diagnosis “cancer” hits most patients completely unprepared. The often tedious treatment-cycles dominate the daily routine and life-planning of the affected persons. Due to crucial changes in every day life, prospectives and priorities change. The life-threatening diagnosis often provokes a psychological crisis. This kind of crisis gives rise to a strong demand for sense-making processes concerning the new situation (Madara, 1997).

In order to cope better with a diagnosis of cancer, patients and family members need information about what cancer exactly implies. But the search for this information is only one part of the coping process. In addition to a longing for knowledge, there can also be a demand for understanding and emotional support from other similarly-affected persons. Furthermore, as research on the coping mechanisms of cancer patients has shown, a desire for interaction and communication with peers can emerge (Leydon, Boulton, Moynihan, Jones, Mossman, Boudioni, & McPherson, 2000).

Information Needs

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

Recent research on the characteristics of the demands of cancer patients has shown the type of information mainly requested. Kaminski, Thomas, Charnley, and Mackay (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 often not 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 being dealing with the individual problems of the single patient (Hiller, 2001). Mutual acceptance, more emotional care, empathy, and holistic treatment, as well as higher quality of and better cooperation among the various health care professions involved in the treatment process, are mentioned as potential areas for improvement.

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 derived from their symptoms and interpreted for their individual situation (cf. 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. She or he may be intensely interested in similar cases and the experiences of others (Bilodeau & Degner 1996; Lieberman et al., 2003; Manaszewicz, Williamson, & McKemmish, 2002).

Not all cancer patients seek information and interaction. The literature demonstrates, however, that those who do actively cope with their situation by means of interaction and information seeking experience less depression and fear, express fewer complaints, are better integrated socially, and often even make better progress in their healing process (McPherson, Higginson, & Hearn, 2001; Zemore & Shepel, 1987; Ziegler, Müller, & Grünwald, 1986; Ziegler, Pulwer, & Koloczek, 1984).

Legal Framework for Internet—Based Medical Services in Germany

The public health system in Germany is a highly regulated sector. Health care professionals are subject to special conditions and the rules of their professional group and/or the organization's specific legal requirements. Medical information services on the Internet are subject to the general legislation of Internet services, although there are few specific rules that apply to offers with medical content (Dierks, Nitz, & Grau, 2003).

Of special interest are the following points: legal liability for the content of external websites (linking to other parties' content); consideration of the medical profession's limits and boundaries in the form of the differentiation between information and medical advice; aspects of data security in the context of telematic services; and specifics for the circulation of scientific information to non-authorized lay persons. This legal framework influences patient Internet services in Germany as it requires, for example, user- and usage-agreements as well as disclaimers. Furthermore, there is a legal restriction that disallows computer-mediated individual medical advisory services. Only physicians are allowed to offer this service following a face-to-face consultation with the patient. Thus, only general information services are allowed for German patient information sites on the Web.

Central Design Elements of a VC for Patients—The Case of krebsgemeinschaft.de

krebsgemeinschaft.de is a VC for breast cancer patients on the German-speaking Internet. Previous research on the user-centric design of this VC revealed several design principles and design elements that were applied systematically. These principles and elements form the core components of systematic community building. (For further details on the community building process and its components in krebsgemeinschaft.de, see Leimeister, 2004). After a brief presentation of the central design elements, we evaluate the outcome of the application of these components in order to show if and how community building was successful.

Important design elements for a VC for patients include the presentation of content (information services), site functionalities, and the use of trust-building components. Principles of importance throughout the entire community-building process are the usability and the accessibility of the system. In the following we summarize these design elements and their characteristics in relation to the VC krebsgemeinschaft.de.

Information Services

The major challenge in the area of information services lies in this special VC's amount of editorial and quality-assured content on the topic of breast cancer. There were two major challenges: the translation of medical terminology into understandable language and the implementation of a categorization structure for this complex subject. During an iterative development process and several rounds of discussions with experts (for background information on development of the VC to meet cancer patients' information needs, see Arnold et al., 2003; Leimeister et al., 2002), the following categorization of the content was developed and ranked according to the expected relevance for the users: a) cancer treatment (therapy, follow-up care); b) identifying cancer (early recognition, diagnostic means); c) cancer research (studies, facts, and figures); d) living with cancer (sports, nutrition, family, sexuality); and e) experiences with cancer (reports from affected persons).

The division into main and sub-categories was intended to help users understand the information provided in a structured way, to support cognitive processing, and to minimize cognitive load.


As regards functionalities, a discussion forum/bulletin board, an “ask an expert” service, a contact search for members, and chat modules are offered. (For the selection and development of these functionalities in order to meet cancer patients' interaction needs, see Arnold et al., 2003; Leimeister et al., 2002.) Further services are provided on each member's personalized starting page: individual interactive services such as an internal email system, a guest book, buddy lists, and awareness functions such as “friends online,”“users chatting,” and “number of members of the krebsgemeinschaft.de” (see Figure 1).

Figure 1.

Information and interaction services, and the personalized starting page, for members of krebsgemeinschaft.de (Source: Leimeister, 2004, p. 201)
Click image to enlarge

The discussion forum/bulletin board enables asynchronous exchanges among the members. It not only supports communication but also the process of members becoming better acquainted with one another. Further, a discussion forum can enhance the creation and the cultivation of a sense of community (Blanchard & Markus, 2002).

The service “ask an expert” is a modified form of a discussion forum where users post their questions and experts (well-known physicians assigned by the community management) answer them. The service is organized in periodic cycles; each cycle has a featured focus and a prominent expert. This reduces the workload for the responding experts and makes the service easier to organize overall. With this service, patients can make inquiries without time pressure.

The contact search aims at supporting members in finding people in similar situations and/or with similar interests. The service is designed to make it easy to contact other members. Thus, it furthers direct interaction among members and fosters a community feeling.

The chat offers the possibility to interact with other members simultaneously. It is synchronous real-time communication that requires at least two participants. To increase the probability of meeting other users in the chat room, fixed chat hours were established in the beginning.

Additionally, each member has his or her own space in the community, called a nic page, and a guest book.

Trust-Supporting Components

In addition to useful functionalities and good information services, the trustworthiness of the services offered is an important success factor for a VC (for empirical findings on success factors for VCs and the special role of trust in this context, see Leimeister, Sidiras, & Krcmar, 2004). In order to sustain krebsgemeinschaft.de, we needed to find ways to establish trust systematically. Two major factors suggested in the literature as influencing the development of trust are perceived competence and perceived goodwill (Abdul-Rahman & Hailes, 2000; Ebner, Leimeister, & Krcmar, 2004).

Perceived competence in off-line environments is monitored by organizations that investigate and evaluate the reputation of other organizations; for example, rating agencies such as Standard & Poor's or Moody's. These organizations collect and analyze information about business partners and provide a rating schema as a commercial service.

Within the context of online applications, many so-called “trust partners” have been established. As independent organizations, these trust partners guarantee compliance with standards, i.e., secure payments and encrypted secured data transmission. In the online world, examples are “Trusted Shops” at online platforms such as epinions.com, or commercial solutions offered by companies such as Verisign Inc. Through continuous examination of, for example, the handling of privacy regulations, these institutions support the development of trust. They may also force business partners to adhere to standards in order to ensure that customers receive the goods and/or services they expect (Shneiderman, 2000).

There are several factors that can positively influence perceived competence and perceived goodwill. Perceived competence can be supported by clear definitions of the various responsibilities of the individuals providing goods or services. The disclosure of all prices, delivery times, taxes, and cancellation fees is meant to be an advantage for the buyer or consumer. Binding terms of use and codes of behavior are applied accordingly.

A further indicator to support perceived competence is the disclosure of patterns of past performance. Examples include airlines' reports of on-time percentages for arrivals and departures, or realtors' statistics on the number of houses bought and sold. The disclosure of performance reports may attract users, as does information about the organization and its management. Even skeptical consumers may be engaged and assured by the transparency of performance numbers (Shneiderman, 2000).

Perceived goodwill is more difficult to describe. It can be experienced as the discovery of a cooperating partner's good intentions and can further lead to the development of interpersonal trust. Examples in the off-line world often refer to aspects such as common courtesy and complimentary behavior of market partners when, for example, a customer's complaint is handled in favor of the customer without a legal necessity to do so.

In accordance with the existing literature on trust, the rationale here was to develop a set of components that affect both perceived goodwill and perceived competence in a positive manner. Hypothetically, the two constructs should have a positive effect on trust. The set of trust-supporting components for the VC consists of a transparent provider concept (who is providing the service and what is their motivation for doing so), an adequate access right concept and reasonable role models (which tasks and roles exist within the VC, who is taking care of them, and which set of authorizations does each actor have), an anonymity concept (each user should be able to determine independently how much of their private data they want to share with other users), and the use of trust seals. For this purpose, the trust seal promoted by the German Federal Health Ministry afgis (Health Information System Action Forum, http://www.afgis.de/index.php?lang=e) was used for krebsgemeinschaft.de. (For further information concerning the development and design of the trust-supporting components, see Ebner, et al., 2003; Leimeister & Krcmar, 2004). Figure 2 visualizes selected trust supporting components as used on an individual member page of krebsgemeinschaft.de

Figure 2.

Selected trust-supporting components on personal member page with guest book (anonymity level “show all data”) on http://www.krebsgemeinschaft.de (accessed March 29, 2005)

Another important factor is community management. Although it is usually associated with activities of community development and community cultivation (see Holmström & Henfridsson, 2002), strong and diligent management may play a role in establishing trust during the early stages of initiation of a VC. Community management activities include ensuring an attractive level of activity in the community through encouraging member interaction and individual activity until a critical mass of users has been reached. During the operation of the VC, community management should assure that rules and norms of the VC are adhered to, through, for example, moderation of the boards. This aspect of community building has been sparsely researched to date. In the following, we briefly outline the design principles “usability” and “accessibility,” as they influence all other design elements at all stages of community building.


Potential users of services on the Internet decide within seconds whether they want to use them or not, thus the usability of services and sites is of major importance. Aspects such as layout, color, graphics, and scripts play an important role. These aspects are often subsumed under the term usability. Usability is always context- and usage-specific: There are no generally valid rules for creating usability. Usability and overall impression have a strong influence on whether websites appear trustworthy and credible (Fogg et al., 2002). From the different usability principles (Mannhartsperger, Linder, & Zellhofer, 2003), one can derive the following meta-principles:

Adequacy of a task: A dialogue with a system is adequate if it supports the execution of the user's task without burdening him or her with unnecessary details (e.g., from the dialogue system).

Conformity with expectations: A system's behavior conforms to expectations if each element/each part of the system represents that part of the design and content that the user expects.

Consistency: A uniform appearance of a system within one context is named “consistency.” Consistency is crucial for usability because the user can rely on already learned patterns and does not have to adapt to new systems. Consistency is one of the most important usability principles (Mayhew, 1992) and leads to usability (Nielsen, 2002; Spolsky, 2001).

Visibility: Well-designed human-machine interfaces have easily visible control elements. Each control element (knob, button, etc.) optimally controls only one function (Norman, 1988, 1992).


As the Internet ensures the transmission of information in the form of text, it can easily be accessed by users with physical handicaps. The usage of one sense organ can be replaced by the usage of another (WEBforALL, 2003a). This attribute of Internet-based information gathering is especially important for target groups such as cancer patients because of restricted micro mobility and other physical handicaps incurred as a result of treatment or the disease itself. However, different kinds of barriers can exist on websites. They are created by the use of specific configurations and designs, and might limit handicapped people from adequately accessing the services.

Since May 1, 2002, German government web sites, as well as all graphical user interfaces provided by them, have to be designed such that handicapped persons can use them unrestrictedly. A barrier-free Internet site is easily readable and navigable with the tools available to handicapped users. To achieve barrier-free Internet sites, various providers have developed specific design guidelines (e.g., WEBforALL, 2003b).

Another relevant component of successful community building can be assigned to the role of community management during the initiation and operation of a VC.

Evaluation of the Systematic Design of krebsgemeinschaft.de—Addressing Acceptance, Utility, and Trust

The objective of this section is to assess the outcome of the systematic design as applied in the case of krebsgemeinschaft.de, in order to answer the following questions:

  • Was the attempt to build a community successful?
  • What findings can be derived for systematic design / community building more generally?

Combining qualitative and quantitative methods can significantly improve the capacity of evaluation findings. This triangulation of methods has some a tradition in IS research (Gallivan, 1997). In order to achieve the best possible results, we used both quantitative and qualitative methods to answer the research questions.

Evaluation Criteria and Methods

To evaluate the efficacy of the design components used during the development of krebsgemeinschaft.de, it was necessary to identify criteria for the success of each single component and to determine the sum of all components. Measuring success and identifying a cause-effect chain for single components is extremely difficult, as it is often not possible to isolate the effect of a single measure on the user. Frequently only the sum of all actions and influences is assessable. Figure 3 illustrates the previously-mentioned design components and their cumulative effects on the success of the acceptance and usage of the VC krebsgemeinschaft.de.

Figure 3.

Intended cause-effect chain between design components and usage, utility and trust in the case of krebsgemeinschaft.de (Source: Leimeister, 2004)

Specific indicators for the success of VCs can be found on different levels. We applied evaluation techniques from both classical social research and online research, especially log file analyses, online surveys, document analysis, and observations. These techniques were applied to the case of the VC krebsgemeinschaft.de; all data refer to the period from August 19, 2002 to May 22, 2003, as long as no other information is given. We began with a quantitative analysis of server log files, then analyzed online member surveys. Finally, several archive analyses were conducted, and observations were analyzed.

Empirical Findings

Performance Measures for the Evaluation of Interactive Elements Within the Community

The core of a VC is the interaction of its members, which mainly occurs in chat rooms or discussion forums/bulletin boards. For the measurement of “member-to-member interaction,” criteria adapted from Cothrel (2000, p. 18) were used. The results are displayed in Table 1.

Table 1. Usage data for krebsgemeinschaft.de during the period 08/2002-12/2004
Measures for the assessment of number of visitors (average values per week) 
  (1) Average number of visits per week596.45
  (2) Average number of page impressions per week1150
Criteria for the discussion forum (averages per month) 
Average number of users in discussion forum per month196
 1. Number of active users (writing messages) per month20
 2. Number of passive users (read only) per month176
  (1) Number of articles 
   a. Number of articles posted per month12.6
   b. Number of articles read per monthCa. 550
   c. Number of replies posted per month29.3
Criteria for the chat (average values per month) 
  (1) Number of users in chat170 (different IPs per month)
   a. Number of active users (writing messages)170
   b. Number of passive users (read only)n.a.
  (2) Number of messagesn.a.
  (3) Number of users connectedn.a.

Log-file analyses and their purely quantitative values are not sufficient for evaluating a VC, however. A small number of active users (such as those in krebsgemeinschaft.de) contribute more to the “life” of a community than a much greater number of passive users, so-called “lurkers” (Nonnecke & Preece, 2000). For that reason, we undertook qualitative analyses in the form of member surveys, observations, and archive analyses. All empirical findings were compared and triangulated.

Use of Services

We focused on the usage of the different components of krebsgemeinschaft.de. We started with analyses of use of the edited and quality-assured content. After that, we analyzed users' behavior concerning the interaction services (chat, forum, ask experts, contact search).

Use of edited content—content categories (top level). The graphical presentation and positioning of the content on the website is presented in Figure 1. The content categories and their arrangement were chosen to correspond with their expected importance as found in other media and services for cancer patients. The top-level content categories (designed as index-cards) with the categories ‘cancer treatment,’‘identifying cancer,’‘cancer research,’‘living with cancer,’ and ‘experiences with cancer’ were arranged in seceding order from left to right.

For all content categories (index cards), user numbers were observed. The user numbers declined after the first weeks, followed by a consolidation on a more or less stable lower level. Relatively high values could be seen in the last month of observation in the categories ‘cancer treatment’ and ‘living with cancer’ (contradicting the assumption that ‘living with cancer’ should be ranked fourth in interest). These topics seemed to be of exceptional interest to the users of krebsgemeinschaft.de. As the editorial content had not changed for a longer period of time, it could be assumed that visitors who already visited the sites several times had satiated their demand for information on those pages and left them out during later visits. Additionally, only a few “new” members registered in the VC during the period analyzed. This could also be an explanation for the declining number of users in this section. The overall decline could be a first hint of the existence of an individual member life-cycle that correlates with an individual information-demand curve, which could depend on the phase of illness or the time elapsed since diagnosis.

Interactive services. The analysis of the development of the single interactive services showed that the contact search especially had rarely been used. The reason for this might be that right after the launch of the platform, a group building process among the new members had started. As a consequence, many users did not experience difficulty finding others since they were already integrated into a newly-emerging group. Alternatively, a reason could be poor implementation of the service. In the user surveys, it was mentioned by several respondents that the contact search was not working as it should or that it functioned too slowly.

Discussion forum/bulletin board. The discussion forum was a frequently-used service of krebsgemeinschaft.de. 367 entries were posted during the evaluation period. Of these, 114 started new threads and 253 were replies to those threads. That means that there was an average of more than two replies per request, whereas the number of answers varied between zero (often no answer was expected, for example in the case of announcements of lectures, expert roundtables, or similar items) and nine. Most commonly, the answers were directly connected to the question. Only exceptionally did a discussion emerge that lost its connection to the initial posting. To evaluate which issues were discussed in the discussion forum, a content analysis of the threads and replies was conducted. Basically, two main thematic blocks could be identified: postings that made a rather factual request for information, and postings that asked for emotional support from other members and showed a desire for integration into a community as well as for empathy. Often the two categories could not be separated, as some of the requests for information were phrased in an emotional way. Examples are questions about the loss of hair after chemotherapy or breast reconstruction.

The discussion forum was mainly used to share individual experiences with others and to learn from the experiences of others. The major part of the communication threads has to be assigned to the “factual” category, although a high percentage of these postings also exhibited emotional aspects. More striking was that very intimate and personal postings were made in the forum. Members spoke honestly and openly about their feelings and personal experiences. It should be kept in mind, however, that the content generated during the first month after the launch was produced by only a few members who were engaged very intensively in krebsgemeinschaft.de.

Nic pages and guest books. The anonymity feature of krebsgemeinschaft.de offered the members the possibility to decide which personal data they wanted to reveal to the other members of the community by means of their personal nic page (non-registered users/visitors do not see any member data). Members have four choices of anonymity levels: Show nothing (other members will see the note: “The member does not want to show their data”), anonymized (displayed: user name, state, status, kind of relationship to the illness, date of diagnosis, kind of cancer, stadium of the disease, form of therapy, hobbies, interests), anonymized but show all to friends (members of a users' buddy list can see all available user data, other members see the data available on the anonymized level), and finally show all (displaying all available data of the user). The nic page is situated above the guest book of the member and can be accessed by clicking on the user name at any place within the VC.

In May 2003, there were 634 active guest books in krebsgemeinschaft.de. Of these, 273 (43.1%) chose “show nothing,” 272 (42.9%) “anonymized,” 9 (1.4%) “generally anonymized but showed all to friends,” and 80 (12.6%) displayed all data to all members of the VC. A strong correlation between the degree of anonymity and the number of entries in the guest book could be identified: While the 273 owners of a guest book with the anonymity level “show nothing” only received 30 entries, the 272 guest books with the nic page configuration “anonymized” received 217 entries. The 80 guest books in the “show all” category received a total of 383 entries and the 9 guest books with the level “anonymized but show all to friends” had 3 entries.

These data seem to indicate that openness could be a major precondition for the functioning of the VC. The more data other members can see, the more guest book entries they post. If members show openness and trust by revealing their identity, they will be rewarded by receiving more postings. This is backed up by the construct of “reciprocity” (Preece, 1999, 2000; Preece & Maloney-Krichmar, 2003). According to this principle, the provision of information to the community is a catalyst for receiving information and reaction from other members.

It is important to note that the distribution of the guest book entries was asymmetric. Some guest books did not have any entries, while those of some very active members in krebsgemeinschaft.de had more than 40 entries.

This result, as well as the fact that many of the entries in the discussion forum were posted by a few members, indicates that a small but very active community of members emerged. This group contributed heavily to the life within the community and krebsgemeinschaft.de seemed to play a vital role in their real lives. The relationships of these active members to each other seemed to be very close, and the interaction between them exceeded the limits of the VC and extended into their offline lives. These members cared very much about the situation and the problems of other active members and tried to support each other.

Member Surveys: Acceptance and Utility of krebsgemeinschaft.de

Conclusions about the individual usage and usability of the platform cannot easily be derived from quantitative analyses. It is even more difficult to gain insights into the utility for users created by their usage of a single specific service within krebsgemeinschaft.de. For the purpose of this article, we define usage as the frequency of use of specific services as reported by the respondent. Following the design components of the VC, usage behavior was analyzed for both information and interaction services. Both spheres were addressed with closed- and open-ended questions. We define utility as the respondents' subjective impression of the advantages they received from using krebsgemeinschaft.de. This aspect was also addressed in member surveys using open- and closed-ended questions. The survey instrument is included in the appendix.

Overall evaluation. The participants in the survey assessed the design of krebsgemeinschaft.de as positive (see Figure 2). This is not surprising when considering the fact that most respondents were using the service intensely. Frequent usage itself can be seen as a positive assessment of the service.

On average, the users agreed that the site was clearly structured, easily readable, and that the searched content could be easily found. The colored design especially was perceived as positive. The users were aware who was providing which content. The loading time and the technical performance of the platform received lower ratings. Correlation between use of different services and duration of membership in krebsgemeinschaft.de. The data show a relation between the length of membership and behavior concerning the use of information services. Of those who were members for less than six months, 55.5% reported using the information services “each time” they visited the VC. Comparatively, only 40% of those persons with memberships longer than six months used these pages so frequently. A possible conclusion is that the subjective importance of the information services declines with increased length of membership.

An even clearer correlation exists between the duration of membership and use of interactive services. Use of these services increased significantly with length of membership: 38.5% of those who were members for more than six months used interactive services “each time,” whereas none of the users with less than six months membership chose that answer.

These findings are suggestive of an individual membership life cycle that is manifested in different levels of use of the system. It appears that new members exhibited a high demand for “hard facts,” as their diagnosis was more recent than it was with older members. As time elapsed, however, users' knowledge became more extensive and the need to use the information services declined. Use of the interactive services shows an inverse development. The longer the person was a member, the more intense the feeling of community and the use of the interactive services became.

Utility. The analysis of the responses to the direct question about the perceived utility of krebsgemeinschaft.de revealed two major reasons for using the VC: On the one hand, the site offered professional knowledge about cancer and on the other, even more important, the users could establish contact with other persons in similar situations. Respondents declared that social relationships and empathy could easily develop. These findings are similar to the results of the analysis of the forum postings. Furthermore, the members said they could easily integrate themselves emotionally into a community and support one another. This is evidenced by the establishment of regular face-to-face meetings.

The following answer to the question “How has the membership in krebsgemeinschaft.de changed your situation?” exemplifies the importance of the service:

The interchange with others is very beneficial for me. Especially right after the diagnosis all people (family, job) assume that life goes on as before. That's wrong!! Of course you don't want to speak all the time about your (bad) mood and your medical status and somehow no one wants to hear it all the time. Therefore the interchange with other patients is important: You get the mental support you need and it is good to know you're not the only person struggling with such a situation. And it is very impressive and supportive to read how other women can cope with the situation. That resurrects your own will to fight and helps you to cope with the healing process or even medical set-backs.

Existence of trust in krebsgemeinschaft.de

During the conception and implementation of krebsgemeinschaft.de, trust-supporting elements were designed and implemented in the VC (Leimeister, Ebner, & Krcmar, 2005). The process of trust-building should be supported by these components in order to contribute to the establishment of a community. The results of an online survey intended to measure trust prevailing within the community seemed to certify the success of the trust building components. Both the trust in the providers of krebsgemeinschaft.de (especially in their expertise) and the trust in other members (especially in their benevolence) seemed to be high.

The responses of the questioned members fits well with this finding: They were prepared to use information provided by the community, and to share their own knowledge and experiences with the other members. They stated clearly that they trusted the secure treatment of their data and the quality of the information provided. Furthermore, it could be proved that a large proportion of the questioned members were acting according to their statements made in the surveys (Leimeister, 2004).

Observations and archive analyses indicated that members candidly and empathically interact with one another, especially via the discussion board and the chat. The log-file analyses and the user numbers (by July 2004 krebsgemeinschaft.de had more than 1,000 registered users) underscore the success of the project. The design measures seem to have had a positive impact on the perceived competence and goodwill of the operators. Similar results were found concerning the perceived goodwill of the other members, although slightly lower levels were reported for the perceived competence of other members. Additionally, the respondents reported relatively high levels of trust in the operators and relatively lower levels (but from an absolute perspective still high levels) of trust in other members of the VC. These data support the underlying theoretical constructs by showing that the elements of the design measures had an impact on perceived competence and perceived goodwill. Furthermore, one can derive from the differences of reported trust and perceived competence (especially of other members) that the cause and effect relationship between perceived competence, perceived goodwill, and trust as presented in the literature was supported.

Along with the results of extensive observations, artifacts of usage comply with this result: Members are willing to use information provided by other members and disclose personal experiences within the community. They demonstrate trust that this information will not be misused and that information and data provided by other members are trustworthy and correct. As verification of this, respondents indicated that they based real-life actions on information gathered in the community. The archive analyses thus generate a clear impression of the motivations for using krebsgemeinschaft.de, of the personal benefits to the users, and of the role trust plays in the VC.

Discussion Forum/Bulletin Board

The evaluation of krebsgemeinschaft.de has revealed various findings. First of all, krebsgemeinschaft.de can be rated as a successful VC. The criteria supporting this are:

  • An increase in registration numbers;
  • Development of a stable, highly active core community;
  • Development of an extended community with passive members (lurkers);
  • Evidence of the existence of the reciprocity-principle inside the core community in terms of the active exchange of information, empathy, and support.
  • Communication was characterized by a high degree of empathy and trust towards both the provider and the other members.
  • Conception of trust-supporting components seemed to produce the desired outcome.
  • Violations of the rules of the community or incidents that could be categorized as rude or impolite were rare.
  • Active members were very content with the social interaction within the VC.
  • Strong loyalty ties to krebsgemeinschaft.de were apparent as most first-day members remained active in the community.

Concerning the demand-coverage of the community platform, most members seemed to be satisfied, though different functions were rated quite differently.

Furthermore, the design (e.g., the GUI and the design of functionalities) was mainly assessed as user-friendly and good. However, the surveys showed that some of the VC's characteristics (e.g., the anonymity options and the contact search) were not known by some members, and therefore were not used by them. Moreover, the survey revealed that the technical reliability of the platform was more important to the members than sophisticated services or functionalities. Although technical equipment was not a limiting factor, conception of a service was much more important for the success of this VC. This was obvious from the very different usage of the service “ask the experts:” Shorter reply times and qualitatively high and easily understandable answers greatly increased the utility and frequency of usage of the service.

The evaluation showed the unique role of valuable, quality content as an asset for attracting potential users. Another critical success factor in building this VC was the role of the community management, which ensured activity and attractiveness until a critical mass of users had been reached. The evaluation also showed that there was a shift in users' information and interaction demands depending on the duration of membership. The desire for interaction and an appreciation for it seemed to increase with ongoing membership.

These results must be viewed in light of the study's limitations. The study sample consisted of members of krebsgemeinschaft.de; those who visited the site but decided not to become members were lost to possible inclusion in the study. Although it would have been difficult to gain access to anyone who visited the site but did not join, the inclusion of non-members could have provided valuable data for testing the effects of the design measures and the underlying concepts: Was it an issue of trust that made them decide not to become members? Interestingly, the log file analyses of krebsgemeinschaft.de showed a low rate of one-time visitors, regardless of which criteria proposed in the literature for measuring participation in VCs are applied (Cothrel, 2000).

Consequences for Further Research

The findings of this exploratory research need further empirical substantiation and should be compared with other types of VCs in order to improve the validity of the results. It would be of interest to compare the findings of this in-depth case study to those of other high involvement VCs or to other domains for VCs outside the healthcare realm. A quantitative research model could be developed on the basis of the findings of this research and the theoretical foundations for virtual communities could be expanded.

Additionally, there are a number of opportunities and challenges for VCs created by new technical possibilities. Ubiquitous access to VCs through mobile digital devices, as well as new (mobile and context sensitive) services for VCs, are potentially very rewarding (e.g., an emergency system for cancer patients with a locating service or a mobile pill reminder). The relevance of these ideas for VCs cannot yet be assessed from the current situation.

Furthermore, there is a need for research on the role and tasks of community management. Substantial work is lacking on supportive administration tools, especially if a community manager administers several communities, for efficient and effective management. Finally, the analysis of social interactions within VCs and the effects on the social network of the members have yet to be fully investigated. Research on the exact utility of healthcare-oriented VCs seems to be especially promising when focusing on measurement of the VC's influences on perceived quality of life.

The results reported in this article provide empirical proof that the chosen approaches for user-centric development, implementation, and operation of a VC for cancer patients within the German healthcare system led to the desired outcomes. They convey a rich understanding of the multi-interdependent influences on Virtual Communities in general, and contribute to a better understanding of community building for patients.


  • 1

    This article is a substantially revised and extended version of Leimeister and 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 December 1999.

  • 3

    COSMOS (Community Online Services and Mobile Solutions) is a joint research 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


Extract of Survey (original & translation in italics)


Nutzung der Informationsangebote von krebsgemeinschaft.de

Usage of the information services of krebsgemeinschaft.de

6. Wie häufig nutzen Sie die folgenden Angebote, wenn Sie sich in der krebsgemeinschaft.de aufhalten?

6. How often have you used the following sections/services when you have visited krebsgemeinschaft.de?

 jedes Mal every timemoistens mostlygelegentlich sometimesselten seldomnie never
A) Informationsseiten / Information pages[][][][][]
B) Literaturtipps / Literature tips[][][][][]
C) Terminübersicht / Schedule[][][][][]
D) Visitenkarten / Business cards[][][][][]

7. Vermissen Sie Informationen zu bestimmten Themen? Wenn ja, zu welchen?

7. Do you feel that some information is missing? If yes, to which topics?

8. Inwieweit stimmen Sie den folgenden Aussagen über die Informationen auf krebsgemeinschaft.de zu?

8. To which extent do you agree to the following statements about information provided on krebsgemeinschaft.de?

 Ich voll und ganz stimme zu / I strongly agreeIch stimme zu / I disagreeTeils teils / I agree partlyIch stimme nicht zu / I disagreeIch stimme überhaupt nicht zu / I strongly disagree
Viele Informationen sind für mich neu / A lot of information is new to me[][][][][]
Hier erhalte ich mehr Informationen als beim Arzt / I get more information than at my doctor's office[][][][][]
Die Informationen sind gut verständlich / The information is comprehensible[][][][][]
Die Informationen sind mir nicht ausführlich genug / The information is not extensive enough[][][][][]
Die Informationen sind gut strukturiert / The information is well structured[][][][][]
Die Informationen enthalten zu viele Fachbegriffe / The information contains too much technical terms[][][][][]
Die Informationen sind aktuell / The information is up-to date[][][][][]

9. Wie häufig nutzen Sie Ihren Briefkasten, wenn Sie krebsgemeinschaft.de besuchen?

9. How often do you use your internal mailbox, when visiting krebsgemeinschaft.de?

 jedes Mal / every timemeistens / mostlygelegentlich / seldomselten / rarelyNie / neverKenne ich nicht / I don't know this function
eMails lesen / reading emails[][][][][][]
eMails schreiben / writing emails[][][][][][]

10. Wie häufig nutzen Sie Gästebücher, wenn Sie krebsgemeinschaft.de besuchen?

10. How often do you use Guestbooks, when visiting krebsgemeinschaft.de?

 jedes Mal / every timemeistens / mostlygelegentlich / seldomselten / rarelyNie / neverKenne ich nicht / I don't know this function
Einträge lesen / reading entries[][][][][][]
Einträge schreiben / writing entries[][][][][][]

Warum nutzen Sie die E-Mail-Funktion nicht öfter? (z.B. zu kompliziert, dauert zu lange)

Why don't you use the email function more frequently? (e.g., too complicated, takes too long)

11. Wie häufig nutzen Sie das Diskussionsforum, wenn Sie krebsgemeinschaft.de besuchen?

11. How often do you use discussion forums, when visiting krebsgemeinschaft.de?

 jedes Mal / every timemeistens / mostlygelegentlich / seldomselten / rarelyNie / neverKenne ich nicht / I don't know this function
Einträge lesen / reading entries[][][][][][]
Einträge schreiben / writing entries[][][][][][]

Warum nutzen Sie die E-Mail-Funktion nicht öfter? (z.B. zu kompliziert, dauert zu lange)

Why don't you use the email function more frequently? (e.g., too complicated, takes too long)

12. Wie häufig nutzen Sie das Expertenforum, wenn Sie krebsgemeinschaft.de besuchen?

12. How often do you use expert forums, when visiting krebsgemeinschaft.de?

 jedes Mal / every timemeistens / mostlygelegentlich / seldomselten / rarelyNie / neverKenne ich nicht / I don't know this function
Einträge lesen / reading entries[][][][][][]
Einträge schreiben / writing entries[][][][][][]

Warum nutzen Sie die E-Mail-Funktion nicht öfter? (z.B. zu kompliziert, dauert zu lange)

Why don't you use the email function more frequently? (e.g., too complicated, takes too long)

13. Haben Sie schon einmal die Kontaktsuche genutzt?

13. Did you ever use the contact search?

Ja / yesNein / noKenne ich nicht / I don't know this function

Warum nutzen Sie die E-Mail-Funktion nicht öfter? (z.B. zu kompliziert, dauert zu lange)

Why don't you use the email function more frequently? (e.g., too complicated, takes too long)

14. Wenn Sie schon einmal die Hilfefunktionen auf krebsgemeinschaft.de genutzt haben, waren diese für Sie hilfreich?

14. If you ever used the help functions on krebsgemeinschaft.de, were they helpful to you?

 Ja / yesNein / noKenne ich nicht / I don't know this function
Geführte Tour / guided tour[][][]
Häufige Fragen / FAQ[][][]
Fachbegriffe / technical terms[][][]
Mr. Check / Mr. Check[][][]

15. Inwieweit stimmen Sie den folgenden Aussagen über das gesamte Angebot auf krebsgemeinschaft.de zu?

15. To which amount do you agree with the following statements about krebsgemeinschaft.de

 Ich voll und ganz stimme zu / I strongly agreeIch stimme zu / I disagreeTeils teils / I agree partlyIch stimme nicht zu / I disagreeIch stimme überhaupt nicht zu / I strongly disagree
Die Seiten sind übersichtlich / The page is concice[][][][][]
Die Schrift ist immer gut lesbar / The page is well-readable[][][][][]
Die Farben der Seiten sind angenehm / The colouring is pleasant[][][][][]
Die Erklärungen (Hilfe) helfen mir, mich zurecht zu finden / The explanations (help functions) help me to navigate on the site[][][][][]
Es fiel mir von Anfang an leicht, die Seiten zu nutzen / It was easy to use the site from the beginning[][][][][]
Es dauert nicht lange, gewünschte Inhalte zu finden / It doesn't take long to find the desired content[][][][][]
Es ist leicht ersichtlich, von wem welche Informationen stammen (z.B. Team der Krebsgemeinschaft, andere Mitglieder, Experten…) / The author of a certain information is clearly visible (e. g. team of krebsgemeinschaft.de, other members, experts….)[][][][][]
Die Seiten werden schnell angezeigt / The sites are rapidly loading[][][][][]

16. Wenn Sie krebsgemeinschaft.de besuchen, was ist Ihnen hierbei besonders wichtig?

16. When visiting krebsgemeinschaft.de, what's especially important to you?

 Sehr wichtig / Very importantWichtig / ImportantNicht so wichtig / Rather unimportantÜberhaupt nicht wichtig / Absolutely unimportant
Ich kann anonym bleiben / I can stay anomynous[][][][]
Die Nutzung ist kostenlos / Usage is free of charge[][][][]
krebsgemeinschaft.de wird von nichtkommerziellen Betreibern geführt / krebsgemeinschaft.de is a non-commercial site[][][][]
krebsgemeinschaft.de bietet ein besonderes Informationsangebot (schnell verfügbar, aktuell, fachlich fundiert) / krebsgemeinschaft.de offers a special information supply (fast accesible, recent, substantial)[][][][]

Sonstiges / Other

17. Treffen die folgenden Gründe für die Nutzung von krebsgemeinschaft.de auf Sie zu?

17. To what extent do the following reasons for the usage of krebsgemeinschaft.de suit your situation?

 Trifft voll und ganz zu / TrueTrifft eher zu / Rather trueTrifft eher nicht zu / Rather falseTrifft überhaupt nicht zu / False
Ich kann die Seite immer, unabhängig von einer bestimmten Tageszeit, besuchen / I can use the site at any time[][][][]
Ich kann die Seite überall, unabhängig von einem bestimmten Ort, nutzen. / I can use the site from any place[][][][]
Es ist mir möglich, auch mit Personen in Kontakt zu kommen, die weit entfernt wohnen / I can get in touch with people who live far away[][][][]
Es ist mir möglich, mit Personen in Kontakt zu treten, die in derselben / einer ähnlichen Situation sind wie ich selbst / I can get in touch with people in the same or a similar situation to mine[][][][]
Andere Mitglieder sagen mir ehrlich und neutral, was sie denken, da sie nicht durch persönliche Nähe beeinflusst werden (wie dies z. B. bei Familienmitgliedern oder Freunden der Fall sein könnte) / Other members tell me honestly and neutrally what they think, as they are not influenced by their personal closeness (like e. g. relatives, friends, etc)[][][][]
Ich kann bei krebsgemeinschaft.de auch vorbeischauen, ohne aktiv teilzunehmen / I can visit krebsgemeinschaft.de without participating actively[][][][]
Ich kann offen über meine Situation und Gefühle sprechen, ohne mir Gedanken über die Gefühle meines Gesprächspartners machen zu müssen / I can talk openly about my situation and my feeling without thinking about the feelings of my conversational partner[][][][]

18. Bitte beschreiben Sie kurz, wie sich die Mitgliedschaft bei krebsgemeinschaft.de auf Ihre Situation auswirkt / ausgewirkt hat (z.B. Sie haben neuen Mut gefasst oder Sie haben hilfreiche Informationen gefunden o. ä.)

18. Please describe shortly how the membership at krebsgemeinschaft.de influences or has influenced your situation (e. g. Did you find new strength or did you find helpful information, etc.)

19. Einmal angenommen, Sie müssten ab morgen für einen Monat auf das Angebot von krebsgemeinschaft.de verzichten. Was würden Sie am meisten vermissen?

19. Hypothetically, if you had to live without krebsgemeinschaft.de for a month. What would you miss the most?