This morning, a popular conservative blogger who uses the name “Jon Swift” reported that Facebook terminated his membership because he used a
pseudonym (his account was later restored). Apparently, he violated the “social utility’s” regulations regarding anonymous users. According to the Facebook representative who wrote Swift an e-mail:
“Our Terms of Use, to which all users agree when they first sign up for the site, stipulate that you must not ‘impersonate any person or entity, or falsely state or otherwise misrepresent yourself, your age or your affiliation with any person or entity.’"
Facebook, of course, has the right to make its own rules about how people use its services. However, its regulations cause some problems for health communicators. One of the key attractions of Facebook is that one can quickly aggregate people around a common cause. I’ve seen this first hand as a member of Facebook when I’ve received invitations to join groups designed to raise awareness about HIV and other conditions. By joining these groups, I was inspired to learn more. In addition, I’ve also received requests to join specific groups prior to joining Facebook.
Herein lies the utility of Facebook for health communications. Conceivably, one could launch a multi-faceted outreach campaign and use Facebook to plan events and deliver or share information -- in fact some are doing this already. However, because many people using the Internet for health (and other purposes) do so anonymously, Facebook’s policies make it much less attractive.
Clearly, many people are using Facebook anonymously, as Swift indicated. Despite this, health communications professionals should think long and hard before using Facebook to augment their outreach campaigns. If thinking about using another social network, they should carefully read its terms of service to better anticipate and avoid potential pitfalls.
Source: Dr. Hsien-Hsien Lei Via Facebook
Regardless of Facebook's position on privacy, it's thoroughly amazing how much health sharing is going on there. Breast cancer survivors, parents of children with Autism, Fibromyalgia, you name it, they're all forming groups. One of the Fibryomyalgia FB groups has almost 2000 members. I'm not sure it's a groundswell, but it's very compelling.
With all of the emphasis on privacy in our society, brought on by HIPAA, the Internet, etc, -- much of it thoroughly appropriate, naturally -- we can lose the importance of real connection between people around their health. Total anonymity can undermine that.
A practical example? It used to be easy for doctors to introduce patients to each other. Today, if they respect HIPAA, they have to seek permission of each person before the introduction. In reality, this means many fewer introductions happen and people are more isolated in their diagnosis. They use the Internet to reach out, they are confronted with a lot of anonymous message board postings.
The model I personally prefer is screen names, verified by email address. We're all then entitled to an identity, but we still have a reputation to preserve. This allows people to share with less fear of discrimination, but reduces flame wars and general bad behavior.
Posted by: Jude O'Reilley | November 20, 2007 10:48 AM | Permalink to Comment