Let’s get on this train: Participatory medicine and the future of maternity care

September 30th, 2009 by avatar

I’ve had an interest in internet use among pregnant women for a while. It’s pretty remarkable to think about the access women have to information and collective wisdom and the potential that holds for their empowerment and informed decision making.

ePatient White PaperAlthough I had envisioned some pretty nifty things we could do with the internet to improve maternity care, I had my mind pretty well blown recently when I came across a white paper called e-Patients: How They Can Help Heal Healthcare. The paper, the brainchild of a truly visionary doctor, introduces a new web-powered paradigm of healthcare in which patients are empowered, engaged, equipped, and enabled to improve their own health and the quality and safety of the care they receive. It also provides compelling evidence that this new paradigm is already revolutionizing health care in ways we couldn’t have envisioned just a decade ago.  One of its prominent supporters recently wrote, “If you have not read the e-Patient White Paper, you do not understand the future of medicine.”

(With that said, those too busy to read the whole paper right now can get a glimpse of its significance by reading the authors’ seven preliminary conclusions, as summed up by one of the White Paper’s most outspoken advocates, Dave deBronkart.)

The White Paper contributors and advocates have recently organized as the Society for Participatory Medicine and I just became their first member from the maternity care community. Thus far, the work of the Society and its members has been decidedly disease-focused, but I see enormous potential to revolutionize maternity care by tapping into this rapidly developing field, learning from its leaders and innovators, and incorporating maternity care issues into ongoing work wherever appropriate.  I was recently invited to write a guest post at the Society’s blog about participatory maternity care (and it’s already gotten some serious attention). I hope I made my case that childbearing women have much to gain from – and contribute to – efforts to make healthcare more participatory. Now, I hope I have made my case to maternity care advocates that we need to pay attention to and, well, participate, in the Participatory Medicine movement.

Here are some ways to get involved:

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  1. | #1

    Dear Amy,

    Indeed – participatory medicine is here to stay! We run Lamaze programs, antenatal and postnatal wellness programs, as well as a Birthing Center in India, and 90% of our participants come through Internet surfing. And, they have all done their bit of research on all things in pregnancy, and are willing to be advocates for themselves.

    What floored me was a question from one of my participants last week – we were talking about stages of labor, and he wanted to know about what happens when the placenta does not detach easily. In fact he says ” So even after you have a normal delivery, you can land up getting cut up to remove the placenta in the odd case, right?” And, I was once again amazed by what parents unearth by googling …

    I will definitely go and read your guest post right away – but, just wanted to say that we as childbirth educators, really do have the awesome job of separating the wheat from the chaff, and directing our expectant parents to credible and current information on the net, so that they can make the best possible choices for themselves.

    Thanks for sharing this great information!

    Vijaya Krishnan

  2. | #2

    Amy, I’m Jon Lebkowsky from the Society for Participatory Medicine – thanks for this post and your support! The Society also has a LinkedIn group (http://www.linkedin.com/groups?gid=1835324), and we’ll be launching the Journal of Participatory Medicine with a panel at the Connected Health Symposium 2009 on October 21 (http://www.connected-health.org/events/symposium-2009.aspx).

  3. | #3

    Boy am I glad we found each other. Next time anyone asks me whether social media is just a flash in the pan, I’ll smack ’em in the side of the head with this story: growing movement meets a whole new constituency, producing an explosion of possibilities.

    Is this as big a deal as when Reese’s mixed peanut butter and chocolate? We shall see. :–)

    And may I say, what a writer you are. So glad we met.

  4. avatar
    Sharon Dalrymple
    | #4

    This is a fabulous connection to be made! What better example of participatory care that a typically healthy woman who is pregnant! We see small pockets of this model in health care, but not very many. I hope the shift to this model will grow quickly, as I see so many benefits to not only women and their families, but to the other members of her health care team as well. Thanks Sharon Dalrymple, new President of Lamaze International.

  5. avatar
    Lisa Crane
    | #5

    Thanks for the wonderful post and insight, Amy! I’m going to share the paper with our team here. This is causing me to rethink some of the plans I had for 2010- it’s always a good thing to question one’s assumptions, isn’t it?
    Lisa Crane- Clarian Health, Indianapolis

  6. | #6

    Amy, I would love to hear any ideas you have about how ACNM can support this with our social media efforts. You know where to find me if you get a bright idea.

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