In the first blogpost, we 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 part will zoom in on the extrinsic and intrinsic motivation to participate in an online patient community. Intrinsic motivation implies that patients contribute to the community for their own enjoyment or because it makes them feel good to help others. In contrast, extrinsic motivation implies that patients participate driven by external rewards such as financial compensation, easy-access to information or status. So, much like with charity runs in which people participate to support a good cause, members of a community enjoy to participate and help others (intrinsic) by exchanging experiences and providing emotional support. But community members also learn from their interactions and might even see the community as a fast and easy way to find necessary health information (extrinsic motivation). You might compare this to working on your own health while participating in a charity run.

In the context of online patient communities, participants are extrinsically motivated since participation in the community is a very cost-effective way of gaining access to information and support and this 24/7 worldwide. Building such a big support network which is available at any time and any place would take much more effort without the existence of online patient communities. On top of that, patients can increase their self-esteem and status in the community by sharing their experiences. Being recognised by others as an expert drives further participation in the community.
Extrinsic motivation is not the main driver for online participation in the case of patient communities. Healthcare is a high involvement sector, and intrinsic value is in fact a much stronger motivator for participation. Altruism, or helping others in their struggle with a particular condition makes patients feel good. Furthermore, patients enjoy participating in online patient communities and often develop an emotional connection with each other which leads to sharing funny stories, beautiful poems and jokes.
In the online patient community “Patients Like Me” people have 24/7 access to a worldwide support network which provides them fast answers to their questions. But patients are also aware that their data is used to conduct scientific research so they are excited to see that they advance research and help other patients.
At InSites Consulting we also aim to create the perfect mix of extrinsic and intrinsic motivators in our Patient Consulting Boards. Extrinsic value in the form of a small monetary reward is provided to overcome the first hurdle of participation. It motivates the patient to discover the community during the first week. However, afterwards the participants get so hooked to the community that the reward is not in proportion anymore with the amount of time spent in the community. At that moment intrinsic value becomes the patients’ main driver. InSites fosters intrinsic motivation through enjoyment, empowerment and creating a sense of belonging. First, by providing challenging tasks and creative assignments we make sure patients enjoy their participation. This fun experience encourages them to continue participating to the extent that they do not want the consulting board to end! Second, InSites makes sure to empower patients by providing a feedback loop in which we explain what impact their discussions and ideas have on the company they are collaborating with. The company spokesperson might write a blogpost in which he/she shares with the participants what they have learned and how they will act upon their new insights. Finally, since participants want to make new friends, an important role of the moderator is to create a sense of belonging. By emphasizing the shared goal of the community and creating a group feeling, the moderator makes sure that the participants are proud of being part of the community.
In the following blog post we will look into the next building block: the trade-off between privacy and trust. 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”