One of the things I love best about working at WEGO Health is hearing directly from Health Activists about their motivations for going – and staying – online; essentially, how the internet and social media has changed the lives of both patients and caregivers today. Generally, we hear that people go online looking for support and information around their diagnosis, or that of a loved one, and that for the most part, they find both support and information within that online community and that the majority of experiences within the online community are positive. As a Health Activist yourself, I’m sure you know that this is a major factor in wanting to stay active and engaged within the online community.
But let’s get real, it’s not all rainbows and sunshine; sometimes you have community members who are negative, disruptive, or even downright mean.
The Pew Internet & American Life Project (if you’re not familiar with Pew, you should definitely check them out – great resource for internet-related research) recently released a new study on ‘The tone of life on social networking sites’ and it got me thinking about what Health Activists see every day as well as what we see in our own community here at WEGO Health. The top line findings from Pew’s report were in line with what my gut tells me about health communities online (“social networking sites” or SNS):
- 85% of SNS-using adults say that their experience on the sites is that people are mostly kind
- 49% of SNS-using adults said that they have seen mean or cruel behavior displayed by others at least occasionally
- 13% of SNS-using adults say yes to “has someone been mean or cruel to you personally”
But, what I found really interesting was some of the information that came from downloading the full text of both questions and answers related to this study. Pew did a great job in probing participants about what actually happens within the community when there is negative, mean, or cruel behavior. A few more data points for you:
|Frequently||Sometimes||Once in awhile||Never||Don’t Know||Refuse|
|When people on social networking sites are being mean or offensive, how often, if ever, do others… defend the person or group who is being harassed or insulted?||22%||32%||23%||15%||7%||1%|
|When people on social networking sites are being mean or offensive, how often, if ever, do others… tell the person to stop?||21%||27%||24%||22%||6%||1%|
|When people on social networking sites are being mean or offensive, how often, if ever, do others… join in the mean or offensive behavior?||10%||26%||31%||28%||5%||0%|
|When people on social networking sites are being mean or offensive, how often, if ever, do others… just ignore the behavior?||45%||28%||13%||8%||6%||1%|
Based on these Pew findings, there is a fair amount of negative or mean behavior that goes unaddressed by the community at large. Having had my own experiences within social networks, I don’t find this hard to believe but when I think about health communities specifically, I’m less sure. Based on what I’ve seen of both Health Activists and community members, health networks are “safer” than the standard social network and most members are welcoming and accepting, but also that community members are more likely to call others out when they’re acting inappropriately.
Pew focused on all social networking sites but it would be interesting to see how health sites compare.
What has your experience been within your own communities?