Pew Internet & American Life Project has released several interesting reports so far this year:
“As of December 2008, 11% of online American adults said they used a service like Twitter or another service that allowed them to share updates about themselves or to see the updates of others.”
“Over half of the adult internet population is between 18 and 44 years old. But larger percentages of older generations are online now than in the past, and they are doing more activities online, according to surveys taken from 2006-2008.”
Susannah Fox, who was involved with both of these reports, also describes that e-patients are more likely than others to Twitter and otherwise update their status online.
I posted a few weeks ago about the facebook initiative that launched for the National Organization for Rare Disorders (NORD). To raise awareness of rare diseases and the need for safe, effective treatments, people around the world joined together to observe the 2nd Annual Rare Disease Day last Saturday. Typically, rare-disorder patients form their own small advocacy group but find it difficult to be heard. These patient communities may be the primary source of information about the disease and treatment options. Many of these patients have never met anyone else in person who has the same disorder, so finding ways to connect and share experiences and support is especially powerful. Here are examples of some of the efforts:
Facebook – There were 15 causes already out there wanting to link with NORD when we started the US facebook page several weeks ago. The Europe facebook page has been going for quite a bit longer and is really picking up traction.
This is a fantastic example of social media at work for the common good. People with rare disorders are obviously hungry to connect with each other to get support, share stories and find out information. This is where they live. This is who they trust. For anyone who wants to know what is going on in a particular patient community, they need to go where the patients are. And for NORD, this is a great opportunity to help connect people across patient communities so that they can help each other identify and solve the common problems all people with rare disorders may face.
Is the use of social media different for people with rare disorders than for people with more common chronic diseases? Does the lack of other avenues for information push these people farther or faster than other people? I would love to hear your thoughts on this below.
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(Image courtesy of tobiaseigen via Flickr)