Wednesday, July 30, 2014

We made the big time! @WSJ #socialmedia #patientvoice @CraigLipset

So I get a call last night from Amy Marcus, the writer who penned the featured article about the dilemma that is raised by this very blog and others like it. The piece, "Researchers Fret as Social Media Lift Veil on Drug Trials",  she said, was tentatively scheduled to go to press today.

I awaken to a tweet telling me I'm a rock star in the clinical trial world.

I click the link in the tweet to read the article and I hit a pay wall. How ironic that an article about my use of social media is hidden from me on the internet. Frustrated, I call all over this one horse town to find anyone that carries it in print.

A friend saw my post on Facebook and emailed me a complimentary link to read the article. And like that I am reading about myself. How odd...

The first thing that struck me is that, of the hundreds of images photographer Bob Croslin took, they went with the most hideous one they could find. He said "give me mad and give me happy. I'm not sure which look they're going for." Apparently saggy and frumpy was what made the cut.

Anyhow, the piece was spot on and factual, however I would have loved if they had included a link to my Partners in Research site. They did link to this blog though, and now I've effectively connected the dots. You're welcome.

Go see all the good work I'm doing over there and how I'm trying to educate others about the use of social media while participating in a study. How was I to know that what I viewed as my own online place to chronicle my progress would have such far reaching implications down the road? It turns out that, as far as anyone can figure, this was the first time a clinical trial had been blogged from start to finish.

I remember thinking at the time that the study site staff weren't going to be reading it so who cared? They were the ones that couldn't know... that's what they told me. If they didn't want me to blog, they should have said so. In fact, it was no secret that I was blogging. It was often the topic of casual conversation at my checkups. They just didn't know I'd met other patients. I didn't think they'd want to know.

So now that this blog has made the Wall Street Journal, there's nothing left that is going to top that. I'll put this blog to bed again. Thanks once again, @CraigLipset, for bringing me up on stage.

One final note: My dad, who passed away in 2000, before any of this ever took place, always encouraged me to write. I thought he was crazy. I didn't see what he saw. We lost him to cancer seven years before the start of this blog, and in the image used in the WSJ, directly above my head is the flag we were given by the U.S. Navy after his death.

He's been with me on this journey all along and it's only fitting that we are together in the picture as well. Thanks for everything Dad! I sure miss you.

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