I believe online communities increase adherence to treatment – do you?

Written by Silja on 18 March 2009 in Adherence, epatients - 5 Comments

If you answered “yes“ above, how did this make you feel?

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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?

5 Comments on "I believe online communities increase adherence to treatment – do you?"

  1. Pill_pharm 22 March 2009 at 5 h 02 min ·

    Thought provoking article. Whether the question is simply medication compliance or a specific health endpoint, I think online communities can vary greatly depending on types of treatment, cross-section of patients involved and who is moderating these communities (i.e. patient vs. healthcare worker).

    Also, it may be very difficult to determine this in a controlled study – since adherence will need to be assessed at baseline and after online intervention. Is adherence achieved because of the online interaction, or the other way around? or by some other external factor?

  2. Silja 22 March 2009 at 21 h 46 min ·

    Dear Pill pharm,

    thanks for your thoughts. Adherence is indeed a very difficult thing to measure. A study would have to first identify the main behaviors that lead to adherence, I think, and then as a second step compare different online and offline tools as to how well they support these behaviors. And you are completely correct, it would also have to include a solid baseline to make this comparison meaningful.

    One thing I stuggle with is that there is probably an underlying biased inherent in the online communities already, meaning that patients that do join communities might by nature be more compliant than those that do not…

  3. Dag Holmboe 24 March 2009 at 22 h 51 min ·

    We have built Social-smart, which is a web application interfacing with social networks. It is a marketing tool for marketers to engage and manage user communities on the primary social networks.

    Previous today, I posted a question about marketing pharmaceuticals on social networks and one poster pointed me to you.

    Based on the above article, I see that our Social-smart can be used both for standard marketing to social network communities, but it can also be used to manage social network communities based on information (versus marketing messages).

    If you are interested in knowing more about what we do and how we hopefully can help each other, please send me a note.

    Best regards,

  4. Jonathan Richman 25 March 2009 at 20 h 14 min ·

    Great post.

    I voted “yes” in the poll, but only reluctantly. Yes, people how are engaged in an online community around their disease are more adherent. However, I DON’T believe that the community CAUSES this. Rather, I think there is some correlation. In other words, people who are likely to engage in online communities are those most likely to be adherent anyway. It’s a simple “hand raiser” phenomenon. Those most interested or engaged with their disease tend to stay on treatment longer.

    This can be measured and, in fact, I have measured it in a past role. The data is proprietary to the company I worked for, but basically, it showed that those who volunteered for the program did slightly better than a control group (no program) in terms of adherence. However, they did the same as another control group who simply asked us to send them a brochure. These people didn’t get all the benefits of the program, but effectively indicated by asking for more information that they were engaged in their treatment.

    So, I’d add one more to the list of 3 above…Psychology. You need to understand the reasons why someone is non-adherent. Typically, the reasons isn’t something practical (like not remembering), but something much deeper seeded on a psychological level. Once you understand this, you can communicate effectively with patients and help them manage their disease and stay adherent to therapy.

  5. Jim Currie 5 April 2011 at 22 h 57 min ·

    I vote yes and largely agree with the points made by Jonathan above. I have seen a few such communities and find them essentially to be positive encouraging discussions between like-minded people/patients. While the opportunity exists for influence to go either way… I believe the net effect is a positive encouragement that leads toward better compliance… For both the active post participants and the much larger observing audience of the net.

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