24h-payday

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

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…

Bloggers

…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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  1. avatar
    Sarah
    March 8th, 2010 at 23:04 | #1

    As a birth consumer, I can’t help but wonder when medical is going to indicate including people. Since my doctor’s had failed to provide me with studies or literature on complications (preeclampsia), risks with inductions, and cesareans, I had to search for my own research. Women’s stories, the blogging, and ICAN ARE my INFORMED consent. I no longer can trust the scientific medical field to provide me with their conclusion on research. Hopefully they will listen to us-on what our problems are with these procedures, at least for what they could do research on. The statistics are obviously upholding my desire for VBAC. So, let’s see how they can close the gap between the data and what’s going to make a healthier environment for me.

  2. March 9th, 2010 at 08:16 | #2

    Amy,

    NIH is a big place, so take my observations with a grain of salt, but I have been impressed with their increasing attention to the world outside. Most of my interactions have been with communications professionals, but the participatory internet has been a topic of intense interest for at least the past 3 years among the scientists I’ve met, too.

    Here’s a post I wrote about a visit to the NIH in 2008:
    Participatory Medicine at NIH
    http://e-patients.net/archives/2008/06/participatory-medicine-at-nih.html

    And another from 2009:
    Shared Kismet: Wikipedia and the NIH
    http://e-patients.net/archives/2009/07/shared-kismet-wikipedia-and-the-nih.html

    I need to think more about this, but I am starting to see parallels between what Twitter/blogs can do in terms of covering events (see: Sunlight Foundation’s coverage of the White House health care summit) and news consumers thirst for multiple sources (see: PewInternet.org/Journalism.org report, “Understanding the Participatory News Consumer”), and the boots-on-the-ground coverage we get from embedded reporters in war zones.

    Thanks so much for bringing your energy & attention to this topic. As I tweeted yesterday, I’m not a health professional or an advocate, but an observer – a *fascinated* observer.

  3. March 9th, 2010 at 10:04 | #3

    Great post, Amy! I just added it to Midwife Connection. Thanks for keeping us all informed and updated.

  4. avatar
    Alisa
    March 9th, 2010 at 18:18 | #4

    Yes, scientific researchers should absolutely pay attention to what women are saying, in blogs and elsewhere. This could happen if the scientific community could cross the aisle more often, and interface on a regular basis with the social science and humanities researchers who are also doing incredible work in this area. I just saw a CFP for the Modern Languages Association conference trying to form a panel of humanities scholars’ work on contemporary birth culture in the US; that is only one of many examples of qualitative scholarly work that could go a long way in informing the scientific literature. Primary research for social science and humanities often includes interviewing people with firsthand experience of an issue and/or going to people’s written testimony in diaries, letters, blogs or other sources. While scientists are sometimes quick to dismiss firsthand testimony as soft evidence, I believe strongly that they are missing the mark, and think that this example–and the myriad amazing blog posts I’ve been reading lately about soaring c-section rates and the struggle for VBACs–is a perfect illustration of how and why. So, yes they should read the blogs, but even if they want to stick within the scholarly realm, blogs and other firsthand testimony are still vital forms of evidence already being used by many scholars in creative and fruitful ways.

  5. April 19th, 2010 at 15:30 | #5

    Yes, scientific researchers should absolutely pay attention to what women are saying, in blogs and elsewhere. This could happen if the scientific community could cross the aisle more often, and interface on a regular basis with the social science and humanities researchers who are also doing incredible work in this area. I just saw a CFP for the Modern Languages Association conference trying to form a panel of humanities scholars’ work on contemporary birth culture in the US; that is only one of many examples of qualitative scholarly work that could go a long way in informing the scientific literature. Primary research for social science and humanities often includes interviewing people with firsthand experience of an issue and/or going to people’s written testimony in diaries, letters, blogs or other sources. While scientists are sometimes quick to dismiss firsthand testimony as soft evidence, I believe strongly that they are missing the mark, and think that this example–and the myriad amazing blog posts I’ve been reading lately about soaring c-section rates and the struggle for VBACs–is a perfect illustration of how and why. So, yes they should read the blogs, but even if they want to stick within the scholarly realm, blogs and other firsthand testimony are still vital forms of evidence already being used by many scholars in creative and fruitful ways.

  1. March 9th, 2010 at 09:40 | #1
  2. March 9th, 2010 at 10:05 | #2
  3. May 31st, 2010 at 23:16 | #3
  4. October 23rd, 2010 at 01:24 | #4
  5. January 3rd, 2011 at 08:06 | #5