It was pretty amazing the FDA reversed their decision in only 9 days. Obviously a lot of it has to do with the efforts of the AAHPM, NHPCO, and the HPNA leaders getting together to present a united front. But behind that is another important story. The role of social networking in getting this message out. It was fax, email, Twitter, Facebook, face to face, phone calls, and blogs. So I put together a slide show to review the order of events from my viewpoint; how I came to find out about the memo, how that message was passed on, how we can learn from this event. (best viewed in full screen)
Pallimed readers were an important part of the leverage of the social network. Could this have happened without Pallimed, Twitter or Facebook? Of course. But an argument could be made for developing more robust and dynamic social networks in our field to help spread the messages important to our field.
Do you have any stories about how you heard or passed on information from the FDA memo reversal?
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9 comments:
I heard about it from your Twitter feed, checked the FDA site and Emailed my boss, who had no idea what was going on. He called some of the other hospice directors locally - they had no idea, either. Made me look good and put us out in front for planning, but did not convince anyone to unblock Twitter and Facebook on our hospital network (I get Twitter feeds on my cellphone as SMS messages, which is how I received this info).
I also wouldn't have heard about this situation if not for your Twitter feed (it slipped by on Facebook and I'm way behind on my rss reading).
On a slightly related note I heard Prof. Bo Burt from Yale Law School suggest that pain medicine suffers from isolation, and that the best way to improve the legal power of doctors treating pain would be to create something like a tumor board but for difficult pain patients. This would facilitate consensus in decisions about treatment and addiction that are inevitably tricky, uncertain, and subjective.
Perhaps some of this teamwork will occur online!
More and more organizations -- including AAHPM and NHPCO -- are viewing social networks as important vehicles for timely information sharing, gathering and reporting. Thanks to Pallimed, Hospice Chicago and many individuals in the Hospice & Palliative Care Community for taking the time to alert all of us to important development. You are our "eye" and "ears". Good work, everyone!
Jay and Ryan,
Thanks for the stories about the role of Twitter. Each of these stories weave a larger picture of how this information was spread.
Jay, your story brings up a point that I did not do well. I posted the info to Twitter but I did not email my medical director. I did call our hospice pharmacist and discussed it with him.
Ryan B, you make a great point to reinforce the power of redundancy.
Steve, I have been glad to see you lead AAHPM to engage in social media. There are different roles for each of us in the network.
Steve, have you been able to get info from the FDA on the number of people on the teleconference?
I first read of the FDA's initial ban on allnurses.com's hospice message board.
After I read about the FDA reversal here, I posted it on allnurses. Not often I get to go full circle!
And I put in a little plug for Pallimed, too.
First let me say how much I appreciate this website, and I thank you guys so much for starting it, and for maintaining it. Now to the subject at hand, absolutely social networks play a hugh part in matters such as this one. One voice gets lost in the trees; 100 voices are heard throughout the forest. I think that the FDA was very surprised at the feedback they received from the hospice and palliative care community. Now that we have made our presence known, we can hopefully build on this and form a collaborative working relationship with them.
Thanks, Beth Dehler
Christian,
Congrats on your contribution to the effort to reverse the FDA's decision. Nice job mapping out how it happened, as well.
I think Twitter/Pallimed, etc revealed that many different people were beating the drum on this issue. Without social media, all of those who were fretting about the decision would have been screaming silently. Letters take long to write (even if it's a form letter) and longer to be read (if they are ever read).
With social media, swift collective protest was made possible. This manifested as a matrix of easily accessible links that well represented the cacophony of voices wailing out in despair. I haven't seen it confirmed anywhere, but one has to assume that someone at the FDA (perhaps many) viewed the cries of protest directly. It's not very hard to search Twitter for "Roxanol." One might envision an FDA intern doing just this and finding Angela Morrow's tweet linking to her post about how the ban would affect hospice patients, your re-tweet of this tweet, and your post on Pallimed (along with all the comments). Only then might it have been brought to the right person's attention that this ban would have unacceptable consequences for patients.
Alternatively, someone might have just recognized that they goofed, but I tend to think social media played a significant role.
Lyle
This is an excellent and compelling illustration of how social networking can help create a unified voice (or roar). It would make a great article in a med journal.
Thanks for the comment ChrisO. I have a lot of irons in the fire now, but this is something I thought might be a good idea too. The encouragement is appreciated!
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