Online Communities patient communities

Don’t Fear What You Don’t Understand

Screen Shot 2014-08-04 at 5.26.37 PMI meet a fair number of social media haters. It is a fascinating phenomenon. For some reason people have a visceral reaction to social media. On the business side of things, we’ve learned that in marketing discussions we will often get a better response if we refer to “digital media” rather than social media. Unfortunately, for many people, when you mention social media and social networks their minds immediately go to “that group of activities that is a huge time suck and is of no real value.”

I know, beyond a shadow of a doubt, that people find community within social networks. There is research that substantiates the fact that when people interact on social networks, their bodies emit oxytocin, the same chemical that is produced when close friends share a great hug. (Check out the research of Dr. Paul Zak.)

“Interactions on Twitter and Facebook seem to lead to oxytocin spikes, offering a powerful retort to the argument that social media is killing real human interaction: in hormonal terms, it appears, the body processes it as an entirely real kind of interaction.” (Source: “Meet ‘Dr Love’, the scientist exploring what makes people good or evil,The Guardian, Sunday 15 July 2012)

Online, people seek out communities of shared interest. These are niche communities made up of individuals who share certain commonalities. When it comes to health, those commonalities could include a chronic condition, rare disease, terminal illness or interest in fitness. But for those of us who don’t belong to health-oriented online communities, we can see the same phenomena at work on our Facebook pages and Twitter feeds, just to name a few. (I also see it on Instagram and LinkedIn, and to some degree on foursquare.)


I promised my wife that I wouldn’t write any more blog posts about my father and his recent death. That pretty much guaranteed the fact that I would mention him in at least one more post! If ever there was a question about whether all of this online activity truly results in community-building, watch what happens on Facebook when a friend of yours has a loved one pass away. The outpouring of support is remarkable.

Having only 271 friends on Facebook is a testament to the fact that I am highly selective when it comes to accepting friend requests. So it was remarkable that, when I first shared news of my dad’s death, the initial post received 71 comments. These weren’t just “likes.” These were people who took the time to write a comment and express their condolences. Similarly, dozens of online friends left comments on my blog to share their support. And it meant a great deal to me. The support was immediate and heartfelt.

People will argue that many Facebook friendships and online relationships are superficial. That is true. The online world is very much like the “in person” world (although I am not a fan of the distinction). Each community, no matter how large or small, is made up of a number if individuals with some common interest. However, one thing you can count on is that the level of involvement on the part of various individuals will vary greatly. Some people are very active in their communities while others play a more limited role. There are leaders and there are those who are just find living on the periphery. Why would online communities be any different?

Screen Shot 2014-08-04 at 5.45.16 PMWhen I first started using social media there was a lot of talk in the media about the “cocooning” of Americans. At the time, much of that was attributed to the impact of television, but I also connected the idea with the impact of emerging social networks. I can remember being concerned that these new technologies would exacerbate this cocooning phenomenon. The impact would be further isolation and less social interaction. It is now my perspective that, at least in my experience, digital media have allowed for enhanced social interactions and allow for a greater sense of connection, rather than isolation. Through social media niche communities are given an opportunity to flourish in a way that was very difficult in the past. Using the example of my father’s death, in the past most of the people who I engage with on Facebook would have had no way of knowing that he had passed away and that I was going through a tough time. The same would be true if I were to suddenly find myself dealing with a chronic illness. In the old days, how long would it take for people to find out? Today, if I choose to share it online, dozens of friends within my community will immediately have the opportunity to lend me their support and advice.

Don’t Hate

Sometimes we are all too quick to judge phenomena that are new and unfamiliar. Those who demean “social networks,” “social media,” “online communities” and online friendships, have not taken the time to examine the power of these platforms and the interaction that takes place within them. Online patient support communities, above all, fill so many important needs of their members. I’m excited to play a role in bringing online health and patient communities to those seeking support, guidance, friendship, camaraderie and health resources.

1 comment on “Don’t Fear What You Don’t Understand

  1. Tim Brennan

    Great blog Dan and very true! Social Media is (and should be) a part of the marketing mix. Those who do not participate in online discussions are missing out on some very effective marketing opportunities.

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