What does online participation mean in questions of health?

Today the Internet represents one of the most important sources of information when it comes to questions of health: A large proportion of Internet users at least sometimes use the Net to search for information relating to staying healthy or treating symptoms (Schubart et al., 2011). The first stage of participation involves those afflicted seeking information. The Internet plays a key role on this level. The simple, permanent access to information relating to a wide variety of questions of health means that users are able to gain greater understanding of their own state of health – and hence acquire broader discernibility in questions of sensible courses of treatment.

Online participation in questions of health: Informationsplattform "NetDoktor"

Example 16: Interested persons and sufferers use „NetDoctor“ to find information on illnesses, their symptoms and methods of treatment. Not always to the delight of the attending physicians.

The term „empowerment“ is of key importance in a context with participation in questions of health. User empowerment takes place across a variety of dimensions. First, patients have access to greater quantities of information; they have new, additional opportunities to assess their own state of health. This means they are able to take a more active, self-determinant role in the treatment of diseases. However, „empowerment“ does not take place merely as a form of self-monitoring and in communication with healthcare providers; instead its principal realm is in sharing information with other sufferers.

Users share tips and advice on questions of health: Online-Community "Mamacommunity"

Example 17: „Mamacommunity“ is an online community for pregnant women, mothers and women who would like children. At its heart we find a forum in which members share tips on questions relating to pregnancy and motherhood.

Studies on participation in questions of health are frequently focused on examples of self-help. Like in the area of participation in culture, this takes place in online forums and communities. Although the numbers of users in online self-help groups are low (less than 10% of Internet users), they represent a particularly interesting example of participative engagement on the Internet (van Uden- Kraan et al., 2011). In many cases lay persons even create the informational offerings. In addition, lay persons offer mutual help and support in questions of health, especially when they suffer from the same symptoms. Interactive self-help on the Internet produces a new form of healthcare: decentralised and bottom-up.

At times these forms of participation prompt concerns with regard to the maintenance of professional standards in the treatment of illnesses. Critical voices are raised that self-diagnosis and treatment can be risky at times if they comes about by communicating with other sufferers. There are reports in some cases that professionals in the healthcare system have found the patients‘ new self-assurance and Internet-assisted (apparent) knowledge a burden (van Uden-Kraan et al., 2008; Hiller, 2012).

Distinctions can be made in terms of the functional motives behind engagement in the area of online participation in questions of health, also. Users frequently go online to search for information. But mutual help and emotional support are considered immense benefits, especially in self-help forums and groups. Illnesses often come with social stigmata – so those afflicted are thankful if they are able to share their concerns and experience openly (Ginossar, 2008; van Uden-Kraan et al., 2009). As fellow sufferers, it is not rare for particularly engaged online users to hold a quasi-expert status; they are particularly committed to the cause and to the concerns relevant to the illness.

Self-help page "Cancer Buddies Network" for Users directly or indirectly affected by cancer

Example 18: The self-help page „Cancer Buddies Network“ is a meeting place for users directly or indirectly affected by cancer where they chat or use a forum to share experiences and provide mutual support.