social media – Natalie Abbott

I thought it would be quicker to ask on social media than to try to find the information on my HMO’s clunky website, or calling and attempting to reach someone in the department directly.

I Tweeted out a basic question:

Can I schedule an x-ray?

And the text above is the response I received, a day later after sending another email through their crazy secure messaging system.

All I asked was a yes/no question.

I know HIPPA is a good thing – privacy and all that. But I spend my work life looking for answers to questions and it frustrates me when the safeguards put in place for privacy put barriers in front of getting information.

How many patients give up, once they can’t get the needed information in a medium they use? How many never bother to take the next step?

I will call or hunt around the web tomorrow, because my feet and legs hurt too much to not do something.

But I don’t like encountering barriers to getting the information I’m seeking.

Last weekend, I attended a planning meeting for the 12th Moebius Syndrome Foundation Conference. As always, it’s lots of work with big rewards at the end… but can I reiterate, lots of work. It’s familiar work, though. I know the rhythms, the questions, the work I have to do. It is a long hallway with crazy purple carpet, but I know (mostly) where it will lead me.

I guess that is what I am both most looking forward to – and a bit nervous about – at my first time at MedX this fall. I’m excited, but that is tempered by the fact that I feel a tad bit inadequately prepared for this.

Yes, I love social media and using social media to connect with others within the Moebius syndrome community and the rare disorders community… I’m just hoping that’s enough to make me not feel completely like a fish out of water! At least I hope so!