What was I thinking? I volunteered. My husband said volunteer is a synonym for sucker, which sometimes I believe. But I make him volunteer at things anyway. At one organization he is known as the man who 'picks things up and puts them down'.
Anyway, I belong to a million or ten online communities. I am on Facebook and Twitter and use both accounts. My business/professional (a/k/a non-patient)persona is on Linked In as well. I also review almost every restaurant and hotel we go to (but that's a little different).
As a medical patient I have seen all kinds of communications and support. And by keeping the active bullshit filter in place, I have managed to avoid the rest of them. There are some sites I do not participate in because I don't like what they do or the way they manage things but I am pretty active otherwise.
But anyway I belong to one site called Wego Health Activists. I contribute there periodically (when I remember to repost by blog over there) and actually met with them in person - which is kind of weird for an online community to meet in person. But they approached me and asked me if I would participate in a session at a pharmaceutical company on the importance of social media. It would mean going to New Jersey for a day. Which means travel. But it would also give me a chance to contribute.
If you think about all the social media that is out there and all the ways patients can communicate with each other - there are organizations, hospitals, medical facilities, patient run, etc. But you never run across any input from pharmaceutical companies do you? No. They are in a black hole somewhere. No input. No information. At all.
Now I know there is the issue of everything has to be approved by their legal department and they can't give medical advice because they aren't your doctor but wouldn't it be nice if there was a little communication in language we could all understand. Its all part of the sharing that is inherent in social media for the rest of us.
Social media is a very important part of being a patient. We get support, we get information, we get referrals, and most importantly, we learn we are not alone. So why can't the rest of the health industry be a part as well?