Social Media for Health, The Good and the Bad.
I am a two-time cancer survivor. In my case with cancer #1, I believe getting connected with other patients online saved my life. It connected me with a world famous leukemia expert when there was none in my home city (although the local docs wouldn’t admit that). That connection led to participating in a single center clinical trial for new medicines not available anywhere else. I received them 10 years before they were approved for general use. So you could say social media saved my life. Since then the online discussion on health matters have exploded. Patients routinely talk to other patients, and a wide variety of doctors, nurses – and hucksters – join in. Now being a SAVVY patient online is required to sort through what’s helpful, reliable information and guidance for you. You have to have your antenna up for someone who is trying to have you act on what may be right for them, or their hospital/clinic, or company, but not right for you. I am not saying people are always pout to get you with a hidden agenda or to do you harm. NO, many are well meaning. But think about this: we are now in the age of personalized medicine. There are many subtypes of illnesses, especially cancers. And, fortunately, there are now more and more targeted treatments for subtypes. What’s good for one patient with what first appears to be the same diagnosis is not necessarily right for the next. So when someone online says you and I are alike, I had this treatment you should too. That may be way off course.
There’s a lot more to debate, including how commercial interests now are heavily into social media and often behind the scenes to skew discussions this way or that or to inhibit discussion. I am eager for our in personal gathering and webcast next week!
P.S. With cancer #2 I am doing well with a new medicine and I chat about it online with other patients all the time. It’s a rare condition and we’ve found each other through social media. That community means a lot to me.