The Pew Internet Project was just starting out studying the social impact of the internet and our director, Lee Rainie, assigned each of the researchers a couple of “beats” (Lee & I had just left U.S. News & World Report so this system was familiar). I was pregnant and doing quite a bit of online research (in addition to working with a midwife practice) so it made sense that I got health as one of my topics.

We worked with the wise & experienced Princeton Survey Research Associates on our first dedicated health survey, fielded in August 2000, and I wrote a report titled, “The Online Health Care Revolution” (see http://bit.ly/g5iJg). I turned in the final draft, went home, then gave birth to my son Sam the next day.

Lee handled all the press for the report, including a radio show which invited Tom Ferguson, MD, to provide his insights. Lee & Tom hit it off so well that Lee hired Tom as an adviser to our project. When I got back to work and met Tom myself, he became my mentor, introducing me to the e-Patient Scholars, and advising the Pew Internet Project’s health research until his death in 2006.

Tom lit up any room he was in with his passion for what we now call participatory medicine. As a researcher I always used that light to dig a little deeper, to sharpen our inquiry, but not to advocate for outcomes. Paul Tarini of the Pioneer Fund of the Robert Wood Johnson Foundation just gave me the best analogy yet for my work: I’m like a geologist, describing, not judging, layers of rock and tectonic shifts.

Amy, your voice is a new source of light for me and I look forward to learning from you as we head into this era of participatory medicine.

@Jill, you are the quintessential maternity care e-patient! It’s good to hear you say it yourself. :)

@Barbara, I agree that there are many opportunities to enhance safety on Labor and Birth floors. With respect to induction specifically, I’m glad to see some of the efforts now to improve management of induction, delay elective births until after 39 weeks, standardize pitocin protocols, etc. But of course I’d love to see much more happen in that area. There are so many inductions for pseudomedical reasons and perverse incentives for hospitals to schedule as many births as possible.

@Vijaya, I really appreciated your comment here and on my blog. Thank you. It is so interesting to hear how this movement is unfolding globally. It sounds like the problems women face in India are similar to those here. My favorite grassroots “participatory medicine” effort around maternity care in the U.S. is The Birth Survey. It serves the exact purpose you mention – (hopefully) steering women to the providers and birth settings with the best outcomes and highest patient satisfaction. There is really overwhelming evidence that a significant (perhaps the most significant) predictor of the outcome of a birth for both mother and baby is where and with whom she gives birth.

Thanks all! I hope this is the beginning of a much longer conversation.