Adherence is a behavior that is driven by a positive frame of mind. It is the decision to take your medicine as your doctor told to, because you believe it will improve your health. It is also an act that implies that you care about your health and well being.
I believe that participation in social online communities, networks, online forums etc. increases this positive frame of mind. Even though there can be an element of “cyber bulling“ and emotional abuse (see my aritcle: The bad and the ugly of patient Internet forums) in some less well monitored patient forums, I am convinced that for the most part online communities induce positive and discourage bad behavior.
Why do I think so? Three main buckets come to mind: 1. education, 2. community 3. commitment
1. Education: The main driver to adherence in my eyes is education. If you know why it is important to adhere to your treatment, diet, etc., and how it can help you stay healthy, you are more inclined to comply. Participating in online communities teaches patients about their disease every day. They are able to ask “fellow“ patients specific questions and every-day advice on living with it. Most patients I interviewed told me that they had learned a lot about their disease by engaging in an online community.
2. Community: In my research and projects I could also witness many times how supportive patients were towards one another. They give great emotional support when the going gets tough AND in the majority of communities, do not accept negative or self-distructive attitudes. There is a true sense of caring and community with clear guidance on what is acceptable behavior and what is not.
3. Finally, I believe that as a patient, online communities become more than just a place of information about your disease. They become your “cyber“ homes. You will make true friends and this will motivate you to “impress“ them by displaying behavior they approve of and value. Stopping therapy, engaging in behavior that is not healthy for you or displaying a negative attidude in general would alienate you from your online friends and you do not want this to happen.
So these are my two cents on the topic of adherence and online communities. I would love to hear whether you agree. What data has been generated on the impact of social online communities on adherence? What would be an interesting study to do?