Part Three was to have looked at several social media sites in more detail and discuss their pros and cons, but the question of the use of Facebook took over the post.

Facebook is accessible. Most people are familiar with it. Organizations can quickly and inexpensively build pages  that allow them to connect with their stakeholders online through social media. There’s just one big problem: it’s very easy on Facebook to disclose personal health information in a very public forum.

Many online communities give people the opportunity to create a user name and therefore to mask their identity. This gives people a greater degree of anonymity in their online communities than offline. This advantage doesn’t exist on Facebook. Most people use their real names on Facebook; it’s one of the requirements that Facebook makes of its users (Facebook, n.d.).

While it’s always possible to create an anonymous identity on Facebook, people generally don’t because they want people to be able to find them. It’s also possible to create private groups, but those have the disadvantage of not being readily accessible to anyone who may wish to participate. Private pages accessible only by invitation have limited usefulness to organizations trying to build connections online.

By using one’s real name and discussing health concerns on Facebook, there is a very real risk that personal information is disclosed with little opportunity to maintain confidentiality. By going on the Canadian Diabetes Association Facebook page, for example, and responding to an article, anyone can access an individual’s personal identity and likely learn something about their health status. This isn’t as great a concern on Diabetic Connect or similar sites which allow for the creation of a user name and where participation takes place behind barriers to casual access through logins and needing to be a member.

When you ‘like’ a Facebook page, postings from that page will show up on your ‘wall’. So by liking the Canadian Diabetes Association Facebook page, people receive news that the organization posts to the page. Diabetic Connect uses its Facebook page to provide information much the way that the Canadian Diabetes Association does. When people ask a question, the page administrators respond by informing the person that they’ve asked a great question and inviting them to “the community”, which is what they call their social networking site.

In another use of Facebook, the Canadian Diabetes Association has recently launched a campaign that invites people to share their stories about what a cure means to them. In return, people are entered to win prizes, including a trip to Disneyland (http://whatacuremeans2me.com/). People are sharing stories about their struggle with diabetes or that of their children, often too young to give meaningful consent to having their information shared. This raises ethical concerns about the posting someone else’s health information. The Association’s privacy policy states that “If you provide information about a family medical history, this information will be considered as your information only, and not personal information of other family members” (Diabetes.ca, n.d.). So eyes wide open. Presumably by posting, people have agreed to this use of their information.  People are posting pictures of their family along with significant health history, which the Association is utilizing as part of a fundraising campaign. This may have unintended consequences for them if and when someone unscrupulous uses this information for their own purposes. In a recent Forbes article, Connor cautioned that hackers can pose as us more easily and commit identity fraud and skip tracers can sell our information to investigators, journalists and others. The advice given is not to post too much information and don’t let your kids, either (“Sharing too much?”, 2012).

Weitzman et al. (2011) examined online diabetes-oriented social networking sites. One aspect of the sites examined was their privacy policies. They describe the dominant assumption of sites’ privacy provisions was ‘proceed at your own risk’ and where terms of use were a substitute for informed consent (p. 296). Part of their recommendations was that sites emphasize the protection of personal health information. Facebook would not seem to facilitate protection, but by now, organizations and individuals need to have thought this through when using Facebook. Greene et al. (2010) examined fifteen Facebook groups focused on diabetes management. There was evidence of emotional support and information seeking and sharing, but they cautioned that information being posted was not verified for accuracy and that people posting could not be identified. It may be that they weren’t aware that most people on Facebook use their own names. They also didn’t identify concerns that people might be sharing too much personal health information in an online environment, which warrants further investigation.

So Facebook or not? The answer for people and organizations is to be aware of the strengths and limitations of Facebook. A good rule of thumb is not to post personal health information or clues to your personal health status on Facebook. Even if the information seems benign, posting to Facebook pages leaves a trail that anyone can follow. With a few clicks it’s often simple to find out where someone went to school, where they live and who they’re connected with. That’s unsettling at any time, but what if the person looking is a co-worker and you haven’t disclosed your health condition at work?  What if it is a recruiter deciding whether to contact you and just wanting to know more about you? While your medical condition or that of your family shouldn’t screen you out of the opportunity to apply for a job, for example, it still could in ways that the individual doing the screening may not even be consciously aware.

Organizations need to ask themselves if they are inviting members of their community to share more information than they should and if the convenience and accessibility of Facebook warrant the risk to their reputation and the online safety of their “friends” who “like” them.

Update October 31, 2012: I received some feedback that this post made participating online less attractive because of the privacy concerns. There are many ways to participate that don’t have the same privacy risks, including blogs and social networking sites that allow for the use of user names. Facebook is a good choice for accessing information. It has serious drawbacks as a discussion forum for chronic conditions.

References

Canadian Diabetes Association. (n.d.) Retrieved from  http://diabetes.ca/about-us/policies/privacy/

Connor, C. (2012, October 19). Sharing too much? It’ll cost you. Retrieved from  http://www.forbes.com/sites/cherylsnappconner/2012/10/19/sharing-too-much-itll-cost-you/

Diabetic Connect. Retrieved from http://www.diabeticconnect.com

Greene, J., Choudrhy, N., Kilabuk, E., & Shrank, W. (2010). Online social networking by patients with diabetes: A qualitative evaluation of communication with facebook. Journal of General Internal Medicine 26(3), 287-292.

Weitzman, E., Cole, E., Kaci, L., & Mandl, K. (2010). Social but safe? Quality and safety of diabetes-related online social networks. Journal of American Medical Informatics Association 2011; 18, pp 292-297.

What names are allowed on Facebook? (n.d.) Retrieved from https://www.facebook.com/help/?faq=112146705538576