“The key thing that patients get from social media is the feeling that they are not alone—that they are connected to others who are going through what they are,” says Creek. “That connection can be instant and ever changing, meeting new people and gaining new insights daily. With Facebook pages, Twitter feeds, blogs, forums on websites, and chat rooms, it is a smorgasbord of interaction opportunities that just isn’t available elsewhere.”
SM outlets bring together many different sources of information, too. Not only from professional and consumer backgrounds, but also from a wide geographic area.
“I would love to see more doctors, especially rheumatologists, become involved with social media,” says Creek. “Not only to converse with other doctors, but also with patient groups. I believe it provides a neutral public space for physicians and patients to discuss serious issues, which can be beneficial and enlightening to everyone involved.”
Henthorn agrees, noting that it is often a two-way exchange of knowledge. Physician participation helps doctors get a better idea of what the patient experiences every day, what scares them, what frustrates them, and what depresses them. This is something that is not possible to get during an office visit every few months.
Main SM Players
The main players in SM have slightly different roles and have slightly different ways patients will access them. Facebook, for instance, encourages conversations, connections, and sharing between both individuals and organizations. Most of the disease-specific foundations and many patients have a presence there.
Twitter, in contrast, promotes real-time sharing and has a method to monitor topics of interest. Postings here, called “Tweets,” are limited to 140 characters, so there are less intense interactions. Some people think of it as a headline news channel.
Blogs are websites that function as a journal or a means for a person or group to disseminate current information on a specific topic. These allow the greatest flexibility in length and format. They may provide a forum or other means for doctors, patients, and even industry to discuss the topics presented.
There are SM channels that have not yet gotten to the high levels of acceptance that the ones above enjoy. LinkedIn is more professionally oriented and has a business-to-business focus. Google+ works as competitor to Facebook and it allows both interest-based communities and individuals to hook up. YouTube is a video-sharing website. While it is viewed as a SM channel, it mostly functions as a place to store information, and people are sent to it from other options. Pinterest is also increasingly popular as a way to share information, inspirational messages, and even humor.
