#DOCasksFDA: Excitement, disappointment, perspective.

Like so many others, I looked/listened/Tweeted in on the #DOCasksFDA presentations on Monday afternoon (or morning, depending on where you live). A conversation between the diabetes community and the U.S. Food and Drug Administration, it promised to open a window to the FDA’s role in our diabetes lives.

I was quite interested in what was going to be said, and how it would be presented. There were numerous presentations by FDA staff and government policy makers, and diabetes community movers and shakers.

Let me just say this, for people who haven’t been at a gathering of this type, and especially for those catching it via the webcast: I do understand that seeing everything via a webcast is not the same as being in the room. But only a few were going to actually be in the room, and that doesn’t mean the rest of us were going to be left totally in the dark. For people who have complained for so long about being left out of the process (define your process here), this was an important step, even if it meant registering for the webcast as a participant, then having to log in as a guest, which probably meant the same thing anyway.

Twitter-KarenBittrSweet

If you don’t know this already, the response was tremendous. In fact, so many people were logged into the webcast that it overwhelmed the web servers at the FDA.

Twitter-DiabetesMine

Honestly, I thought it was possible that we just overwhelmed the meeting capacity of the Adobe® Connect session that was set up for this event. Regardless, it was almost certainly a case of a huge amount of people trying to look through a tiny keyhole all at the same time.

In a way, that’s a good thing, right? We showed the FDA how big a group we are, and how seriously we take the FDA’s role in reviewing and approving drugs and devices. This is proof positive that we have serious questions and concerns, and a big desire to know more.

Twitter-gborkman

On the other hand, it was disappointing to have a large slice of the meeting completely lost. I mean, I started work at 7:00 a.m, worked straight through without a break until the webcast began at 1:00, then worked another two hours after, just so I could take it all in live. So when the webcast went down, then just the audio came back for me, then even that went down again, I felt a real sense of loss.

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Still, I think a sense of perspective needs to prevail here.

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This is the first time a forum like this has been live streamed between the FDA and the diabetes community. If events like this were reccurring, I would feel good knowing the worst technical problems occurred the first time around, and things got better after that. I’m bummed about missing so much, but I’m willing to forgive a little more the first time around.

Also, we did have the Twitter feed (hashtag: #DOCasksFDA) to rely on when things went awry. It’s not the same as being there, but it is something.

And the best part is that the presentations will be available soon online. I’m hoping that includes recordings of the parts of the webcast those of us not in the room missed.

Most of all, it’s important to note two important things about that afternoon:

1. The FDA is engaging with us.

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2. The diabetes community showed an amazing amount of interest, concern, and advocacy during those three hours, webcast or not. This was Tweeted by Manny Hernandez in the first half hour, and the conversation only accelerated from there:

Twitter-askmanny

Considering the technical difficulties, I hope something like this can be done again very soon. The need exists. The desire is certainly there. I am very grateful to the FDA for agreeing to do this, and for trying to solve technical problems when they happened. I’m grateful to Kelly Close, Adam Brown, and the DiaTribe team for facilitating this event. And I couldn’t be prouder of the rest of the diabetes community, who turned out in oversized numbers to voice our interest in interacting with this government agency. It can only get better from here, yes?
 
 
 

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Comments

  • Kate Cornell  On November 5, 2014 at 11:40 am

    Yes, this was an historic event! Yes, I was glad to see so many PWD involved! Yes, it can only go up from here!! Thanks for your post.

    Like

  • Karen  On November 11, 2014 at 3:41 pm

    I’m so thankful for this event and for the response it got – even if it did crash the servers. It can be used as a learning experience for the next one, I hope!!

    Like

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