In the first blogpost, I described the 5 building blocks of successful online patient communities, i.e. diversity vs similarity, extrinsic vs intrinsic motivation, privacy vs trust, moderation vs control, and sociability vs usability.
This post will zoom in on the importance of both privacy and trust when managing online patient communities. Patients do feel uncomfortable to share sensitive and personal information online since it might be unclear who has access to it and how it is processed. Reluctance to provide personal information due to privacy concerns is therefore considered as one of the main barriers for participation in online patient communities.
Tweetaway: Privacy concern is the main barrier for community participation http://insit.es/2bK8JpF by @svoerle via @InSites #mrx #mroc
However, for the success of the community it is necessary that patients share personal health information with peers in order to foster trust and interaction. The extent to which a community member discloses personal information impacts the level of trust created among community members and consequently on information sharing and knowledge creation. In particular, disclosing personal information contributes to two kinds of trust. First, community members will have more trust in the knowledge others share, since the personal information will reveal their connection to the shared topic of interest. For example, in a cancer support forum, revealing detailed treatment information in one’s profile will generate trust in that person’s ability to make a valuable contribution to the community conversation. Second, it will foster trust in the integrity of that person. Knowing more about a person makes it easier to judge whether he/she will act according to socially accepted standards and norms. Both types of trust will contribute then to a higher degree of contribution to the discussions in the community.
The online community Patients Like Me nicely balances the patients’ need for privacy with tools that promote trust building. Each patient that joins the community is obliged to create a profile containing personal information. However, patients can freely choose to use a nickname or rather use a picture of an avatar rather than a photo of themselves. Furthermore, the platform provides a section ‘about me’ where patients might provide a little bit more detail on who they are, next to the factual information about their condition.
In the Patient Consulting Boards, that InSites Consulting manages for its healthcare clients, patients also can choose a nickname and avatar in order to increase their feeling of privacy. Next to that, we make sure that we start every active period with an introduction activity where patients can introduce themselves as detailed as they feel comfortable with. Then, when the activities start, we might mix blog tasks with discussions in order to provide patients with enough privacy to talk about sensitive topics.
In the following blog post we will look into the next building block: the trade-off between moderation and control. So stay tuned!
Source: Sarah Van Oerle (2016) “Value co-creation in online health communities: the role of participants’ posts, network position and behavioural patterns”