Jill was also kind enough to answer a few questions about the new site and the data behind it.
Robin: Why this site? Why now?
Jill: The need for a site like this has existed for a long time. I reserved the domain name about a year and a half ago, but it wasn’t until I had completed the research I presented at the American Public Health Association Annual Meeting in October 2011 that I started pulling it all together for the public.
I suppose I could try to come up with a big response about how the U.S. cesarean rate finally fell one-tenth of a percentage point to 32.8% after climbing steadily for twelve years and how the cesarean section is the most frequently performed surgery in the country, which motivated me to rush out and start this site immediately. The truth is that I have carefully observed what people read on the blog, The Unnecesarean, and the most popular posts were sensationalistic junk stories, articles on defensive medicine and cesarean rates. I got very tired quickly of purveying sensationalist junk. Our Defending Ourselves against Defensive Medicine series in January 2011 was a solid culmination of a lot of discussion, research, rhetoric and dogma about defensive medicine and received a lot of praise. However, it left a few of us bloggers scratching our heads, wondering if we really had anything left to say. Fortunately, I became fascinated by the breadth of the topic of data transparency and reporting of procedure utilization in maternity care and beyond.
Robin: How would you like women to use this site?
Jill: As with everything pregnant people can get their hands on, it is one of many tools. Everyone makes decisions differently and weighs things based on their unique experiences, values, preferences and education. For example, a 60% total cesarean rate might trigger a different reaction for different people. A woman that passionately wants to avoid an unnecessary cesarean section might be deterred from giving birth there, while one hoping for an elective primary section might infer something about the culture of the hospital and seek a provider that delivers babies there. Another person might try to evaluate what exactly that means and start investigating why it is so high, while someone else might not care one way or the other where they give birth as long as they are with a care provider they like.
Ideally, it would be nice to see the site used by pregnant people for the purpose of seeking preference-sensitive care and opening up dialogue with their provider about what they can expect at the hospitals at which their provider has privileges.
Robin: What if women see a hospital status (for VBAC ban) listed and they've been told something else?
Jill: The VBAC information comes from the International Cesarean Awareness Network’s VBAC Policy Database. Each page has contact information for ICAN at the bottom so they can be contacted directly, both to share information about their experience with a particular hospital but also in case they need to connect with someone locally.
Robin: Where did the data come from?
Jill: The cesarean rate data come from all over the place. My first thought when brainstorming on possibilities for the site was to present to consumers and to the public something standardized, clean, consistent, reliable—everything you want in data transparency. As I kept poking around, I realized that the story here isn’t to—POOF!—present the world with the best possible data. To me, it is extremely interesting to first show everyone how bad the current reporting landscape is.
I could have called on friends in different organizations to hook me up with spreadsheets (although it wouldn’t have been ethical to publish them if I hadn’t signed a data use agreement so that’s irrelevant, isn’t it?), but instead I spent a couple of months compiling all of this as any member of the public would. I used pull-down menus on state hospital association price comparison web sites and entered numbers by hand into spreadsheets one by one. I scoured state department of health web sites. There were a few states that evaded me and I found them on Our Real Village, which was a relief.
I did the simplest thing I could do to present these data in a “standardized” manner, which was to just take the most recent total cesarean rates (cesarean deliveries divided by total deliveries) for each state and just post those. The source of each state’s data is noted under the rate tables and the data page spells out why caution should be exercised in evaluating the data on this site.
I hope you'll be sure to check out the new site and see what spark Jill brings to the discussion of transparency in data for maternity care.
