Tuesday, March 9, 2010

Will the NIH Panelists read the blogs and Twitter feeds? And should they?

by Amy Romano, CNM (Originally published on Science and Sensibility for Lamaze International on March 8)

I spent the good part of today glued to the live webcast of the National Institutes of Health Consensus Develop Conference on Vaginal Birth After Cesarean (VBAC). The agenda was packed with expert testimony on the findings of a systematic review of 35 studies involving over 660,000 women with prior cesareans, prepared by the Agency for Healthcare Research and Quality.

So many important findings were presented that I would not begin to do them justice if I summarized them here. What amazed me as much as the incredibly enlightening science, though, was the remarkable involvement of consumers and consumer advocates, many of whom are very savvy users of social networking tools such as blogs, Facebook, and Twitter.

And another interesting thing happened: the NIH Panel acknowledged the bloggers. Gina from The Feminist Breeder posted this picture of a slide from their introduction…


…right around the time that I was tweeting this:

Screen shot 2010-03-08 at 8.19.39 PM(for the Twitter-naive, FTW is “for the win” and #nihvbac is the “hashtag” for the conference.)

They are right: there is an active blog community on the internet. And we’ve been “actively blogging” about VBAC for several weeks now. The blogging effort was coordinated, too. The International Cesarean Awareness Network pulled together an amazing collection of links to posts all over the internet on the topic of “VBAC as a Vital Option.”

This all got me wondering: have the NIH panelists been reading our blogs? And should they?

The panelists are supposed to be independent and objective (as we have seen, this is rarely if ever the case). But does independence equate with impartiality? And do the rules of impartiality that govern, say, juries in courts of law (eg, don’t google the case!), pertain to independent scientific panels?

Surely they’ve read somewhat if not extensively in the the scientific literature on VBAC. After all, the NIH would want to choose panelists who would be able to effectively do their job: coming to consensus on VBAC, and doing so requires some familiarity with the research and clinical issues. All of those testifying have affirmed that the available literature for nearly every important aspect of VBAC decision-making is “thin,” “scarce,” or “limited” and that major areas for future research include emotional and mental health outcomes, quality of life, long-term health, and impact on mother-infant bonding and breastfeeding. So if the scientific evidence cannot provide answers, what about asking women themselves? Especially those of us who are eagerly sharing our perspectives and personal stories on blogs and Twitter?

I’m interested to hear others’ thoughts on the role (if any) of consumer advocates, connected via social media, on the scientific panels like the NIH meeting.

I have to end it there to take part in a Blog Talk Radio Show with The Feminist Breeder and Debra Bingham, the president-elect of Lamaze International and the Executive Director of the California Maternal Quality Care Collaborative. Tune in!

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