What changes online participation in questions of health?

The central descriptor for online participation in questions of health is „empowerment“ – the process of strengthening users or patients. Users who become engaged with questions of health on the Net perceive themselves to be better informed and recipients of greater social reinforcement. Users who suffer from an illness report that they find it easier to cope with their disease, that their mood improves, and that they feel more optimism when it comes to appraising the outlook on their own state of health (Rodger & Chen, 2005; Hoybye et al., 2010). In contrast, users who are not engaged tend to avoid dealing with their illness. They feel more fatalistic in the assessment of their personal situation (Hoybye et al., 2010).

„Empowerment“ is not merely an objective question of information and education: It is also a question of attitude. Nevertheless, the question of whether a sense of greater control and competency and a boost in optimism triggered by online participation may themselves impact on a person’s state of health remains largely inconclusive. But engaged patients frequently feel able to make better decisions concerning their personal health and the treatment of their illness, and they appreciate greater therapeutic autonomy (van Uden-Kraan et al., 2009). Hence one could say that they emancipate to become something akin to enlightened consumers (Sandaunet, 2008). This is not least due to a greater subjective assessment of personal competency and a boost in self-assurance (van Uden-Kraan et al., 2008).

In many cases these positive repercussions of participation on the Internet are rooted in social interaction on the Net. Engaged users have a sense of belonging to a community – so once more we find a correlation between online participation and identity formation. Compared with less active users, patients who actively engage with a thematically focussed online community consider this topic to be an integral element of their identities. The social dynamism associated with group membership therefore impacts on self-perception (Sandaunet, 2008).

"Pink Ribbon": Website with a variety of blogs to address topics relating to all aspects of breast cancer

Example 19: The website „Pink Ribbon“ has a forum and a variety of blogs to address topics relating to all aspects of breast cancer. It also communicates and coordinates activities scheduled for the offline world.

In some cases this dynamism may lead to a form of activism, for instance when group members agree to coordinate in the representation of their interests to the outside world (Ginossar, 2008; van Uden-Kraan et al., 2008). In particular, there are studies on this phenomenon that use the example of breast cancer and political activities intended to fight the disease. Another, albeit controversial, example is found in anorexia communities in which those afflicted engage in supportive discussion on their eating disorder and share tips on how to maintain or hide their condition (Cierpka et al., 2011).

Even if it is fair to assume that „empowerment“ due to online participation will strengthen patient power in their dealings with healthcare providers (van Uden-Kraan et al., 2008), it would be incorrect to conclude that this will automatically lead to tension or burdens – for instance in the relationship between physicians and patients. Informed patients who believe they have control over their treatment, meaning they support the therapy selected, exhibit greater confidence and optimism in their appraisal of treatment success. They are more prone to accepting their situation and tend to remain more consistent in sticking to the treatment schedule (van Uden-Kraan et al., 2009). It follows that medical research is investigating new treatment philosophies that build to a greater extent on informing and involving the patient. Instead of accepting treatment based solely on their respect for a physician’s authority, treatment is then selected in a process of consultation with the patient and then carried out in a spirit of partnership as a mutually agreed procedure.

By the way: There are online communities for groups other than patients. The value of online participation for family members of those afflicted has also been investigated. It was shown that engaged users appreciate the emotional support they receive in these communities above all. It follows, therefore, that they report on a greater sense of well-being compared with non-users (Tanis et al., 2011; Hiller, 2012). The question of whether single patients exhibit a greater or lesser tendency toward online participation remains largely unclear. While a family environment can provide support and hence reduce the necessity of online engagement, a lack of understanding in the same setting will increase the perceived need to share with outside parties.

Again it is true that online contacts rarely transition into the offline world (Rodgers & Chen, 2005). Although a shared concern may be sufficient to establish a sense of community online, it often remains an inadequately broad foundation for actual friendship. Indeed, users who seek and find their primary source of information and support tend even to withdraw from relationships in the real world (Epstein et al., 2002). It follows, therefore, that participation on the Net comes with risks. These may extend to the emergence of new pathologies due to false use of the Internet, for instance an „information overload“, concentration difficulties or also excessive information consumption („infobesity“) or Internet addiction (Schieder & Lorenz, 2012; Eichenberg, 2011).