A Lifetime of Participatory Medicine Can Start With Maternity Care

amy_romano_portraitAs promised yesterday, here is Amy Romano’s guest post for our series leading up to the Oct. 21 launch of the Journal of Participatory Medicine.  Amy is a nurse-midwife and advocate for mother-friendly maternity care. An expert in research analysis, she manages the Science & Sensibility blog for Lamaze International. Follow her on Twitter: @MidwifeAmy.

If you’d like to propose a guest post topic, contact me.  Amy’s post:

What if we could help a large population of highly motivated, influential health care consumers become empowered, engaged, equipped, and enabled? And what if they could develop these skills while they were healthy – before they face life threatening illnesses or need to manage chronic conditions? What if transforming the way these consumers participated in their care could reduce the burden of one of the most costly conditions in our health care system and improve the health of millions of people each year?

It’s all possible – if we make maternity care more participatory.

Eighty five percent of U.S. women will give birth in their lifetime, and about 4.5 million of them will do so in the next year. Engaging these women in their own healthcare in pregnancy and birth could have major implications:

  • Public Health Impact: Engaging one consumer for better health benefits two people (or more, in the case of multiples). Missed opportunities to promote health in pregnancy can have lifelong consequences for babies, and increase risks in future pregnancies.
  • Quality Improvement: Informed, actively engaged consumers could help curb the overuse of ineffective and potentially harmful obstetric practices, increase utilization of beneficial forms of care, and rein in unwarranted practice variation.
  • Prevention of Chronic Disease: Pregnancy or childbirth can trigger the onset of new chronic conditions in women, such as ongoing pain, obesity, high blood pressure, incontinence, and mood disorders. With coordinated, individualized care and active patient engagement, these conditions often can be prevented or efficiently managed.
  • Cost Containment: Maternal and newborn hospital charges ($86 billion in 2006) far exceed those of any other condition. If patient engagement led to even modest cost savings, the impact on the overall cost of healthcare would be significant.
  • Improved Health Literacy: Women will go on to make health care decisions for themselves and their children. According to the e-Patient White Paper, many will also engage in healthcare decisions of other family members and loved ones. Pregnancy can be a time when women become savvy healthcare consumers, and gain confidence to find and interpret health information, engage in shared decision making with healthcare providers, and manage self-care.

Childbearing women are also an ideal population to adopt innovative participatory health care tools, because they’re already online and highly connected in social networks. A national survey of women who gave birth in U.S. hospitals in 2005 reported that

  • 76% of childbearing women turned to the internet for information about pregnancy and birth.
  • 1 in 6 first-time mothers and 1 in 8 experienced mothers rated the internet as their most important information source.
  • One in 5 women who used the internet at all for pregnancy and birth information reported doing so at least 100 times.

Four years later, the number of pregnant women online and the intensity of their online engagement have almost certainly increased. In fact, a new survey suggests that maternity care consumers are driving much of the social media activity among hospital patients aged 25-34.

Unfortunately, a “doctor knows best” attitude prevails in most maternity care settings. Rather than honing their skills as effective, engaged consumers, women are learning to be passive recipients of standard protocol.

Health outcomes, not surprisingly, are wanting. Indicators of maternal and newborn health – rates of cesarean section, low-birth weight, prematurity, and perinatal and maternal mortality – are getting worse or stagnating at unacceptable levels.

Maternity care will only improve when women claim their autonomy and participate in maintaining and managing their health. The payoff would be immense: healthier mothers and babies and a population of healthcare consumers ready to take control of their health, make informed choices, and use the tools that keep them engaged and connected.


Posted in: maternity | positive patterns | pt/doc co-care | trends & principles | Why PM




27 Responses to “A Lifetime of Participatory Medicine Can Start With Maternity Care”

  1. This is outstanding and I love the concept. I am an e-patient! I’ve seen a trend for years of doctors online mocking the so-called layperson for trying to be an “empowered patient” and attending Google University or self-diagnosing on Wikipedia. The truth is that the internet has allowed patients to find each other, inform each other, warn each other, point each other in the direction of appropriate resources and mobilize.

    So I guess I’m a proud e-patient that is glad to help other women become e-patients!

    I look forward to more posts about maternity care and participatory medicine. Perfect fit.

  2. It’s a pleasure to meet you, Jill.

    It would be a real help if you wanted to post your own story on the Society’s new discussion forums – which happen to be EMPTY at the moment, so have at it. As you might guess, we’re an entirely participatory group, open to whatever people want to talk about, so don’t worry about “doing it wrong.”

    You can join the Society if you want (it’s cheap and there are “scholarships” for those who need one), but also for a limited time (few weeks?) the discussion forums are open to anyone. So please, express yourself and bring friends. (It’s not that we want web traffic – we don’t have ads. We’re really about growing this new conversation in the world.)

  3. I do believe I will jump in the forum. Thank you for telling me about it.

  4. Great summarizing the potential, Amy. You know I have the “patient safety” dog in this fight. I think a tipping point may come when women recognize that choices made for convenience (and the perceived peace that comes from knowing things like “When will labor start?”) should be analyzed in the context of risk reduction.

    While it can be life-saving to intervene at or near the time of birth for cause, the assumption that labor needs to be routinely initiated or circumvented begs the questions, “Is this a wise thing to do?” and “Do the benefits I perceive outweigh the risks?”

    I spend most of my professional time figuring out how to ensure that a plan of care is carried out as intended. Is the system able to deliver the result reliably? And how does patient leadership/engagement affect attainment of the desired outcome?

    Asking, “Is this the right plan of care?” is a fundamental question that consumers should ponder (both for beginning- and end-of-life care).

    Soldier on! (From the one-time L&D nurse who, over twenty years ago, drove past a slew of hosptials where midwives were not credentialed, to be allowed to give birth in a country hospital where they were.)


  5. Wonderful thoughts, Amy.

    I do know that one thing that deeply affects the decision-making powers of educated, internet-savvy, googling expectant moms and dads, is the fear of untoward outcomes if they do not follow “standard protocol”. From being well-informed outspoken advocates for themselves during pregnancy, they go to “passive patients” during labor and delivery. The current system in most hospitals is stacked against “true” informed decision making. So I think our advocacy should begin at helping them choose the right place of care, versus the right plan of care alone. Am I being too naive?

    One of my current expectant moms is shifting her place of stay to our city (Hyderabad, India) from where she lives, for the last 3 weeks of her pregnancy, in order to birth her baby with us at our Birthing Center. This is because no one in her city will let her go beyond 39 weeks because she is a gestational diabetic. And, since she wants to try for a VBAC they tell her that she will need to go for elective C-Section if she does not set into labor by 39 weeks. This mom wrote to me, a long letter, with 3 pages of researched info and links to various websites to try and make her case about why she felt it was silly to be automatically sectioned at 39 weeks, and would we accept to consult with her, and help her deliver? Needless to say, we gladly accepted. Point is, participatory e-medicine is definitely here to stay!

    Thanks for an insightful guest post-

    Vijaya Krishnan

  6. Jennifer PM says:

    What an excellent idea. I can only hope that doctors will pay attention to what women want as they are better informed and interconnected. I consider myself outspoken, but was unable to tell my OB why I was leaving her care when I switched to a midwife.

    I absolutely respect the fact that doctors have years of training and experience under their belts, but patients with informed opinions and preferences deserve to have these taken under consideration when developing a treatment plan.

  7. Amy Romano says:

    Thanks for all the great comments.

    @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.

  8. Susannah Fox says:

    My professional health research journey began with my first pregnancy in 2000.

    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.

  9. SusannahFox says:

    Must-read post by @MidwifeAmy on how pregnancy could be a gateway to lifelong health via participatory medicine http://bit.ly/4eOKHr

  10. SusannahFox says:

    Pregnancy turned out to be a gateway to lifelong health *research* for me (see my comment on @MidwifeAmy post) http://bit.ly/4eOKHr

  11. RT @susannahfox: Grt post @MidwifeAmy on how pregnancy could be a gateway to lifelong health via participatory medicine http://bit.ly/4eOKHr

  12. RT @SusannahFox Must-read post by @MidwifeAmy–pregnancy a gateway to lifelong health via participatory medicine http://bit.ly/4eOKHr

  13. Amy, you have made excellent points.
    I believe that nurses can encourage participatory medicine. I was so proud of one of my young nurse colleagues. She was caring for a woman whose labor was progressing slowly. The doctor came in and said that it was time to do a cesarean section. (Note; the baby was healthy, not stressed). This nurse asked the patient if she would like to try an epidural first to see if it relaxed her and assisted the progress of labor. The patient replied that she much preferred trying an epidural first, hoping to avoid a c-section.
    The doctor was upset that the nurse intervened. But the patient did get epidural anesthesia had a normal spontaneous vaginal birth three hours later.

  14. Amy Romano says:

    Thanks @SusannahFox for tweeting my PM post. That post has legs! Seems like folks are still finding it. http://bit.ly/4eOKHr

  15. Melissa says:

    I LOVE this post, Amy.

  16. SusannahFox says:

    Uneventful pregnancy can flip a switch, too – read @MidwifeAmy re participatory medicine http://bit.ly/4eOKHr

  17. Amy Romano says:

    Thanks, Melissa! I see that you put it out on the ACNM Facebook page – it might be good for the next e-News or Quickening, too.

  18. Sue Benizio says:

    As a mother who endured a premature twin birth, an induced labor and an epidural administered too late in labor, I applaud Amy’s efforts. How I wish I could turn back time and take control of my children’s births! And how I wish I could convey to all of you the sheer joy I felt at attending my grandchildren’s home births – they were truly the most amazing and beautiful experiences I ever had.
    Oh yes, I forgot to mention that Amy is my daugher!

  19. […] A Lifetime of Participatory Medicine Can Start With Maternity Care | e-Patients.net. […]

  20. […] time to give back, people. The book is entering its next edition in 2010. (Our guest blogger Amy Romano is on the editorial team!) Executive Director Judy Norsigian writes: Like other valuable […]

  21. […] time to give back, people. The book is entering its next edition in 2010. (Our guest blogger Amy Romano is on the editorial team!) Executive Director Judy Norsigian writes: Like other valuable […]

  22. […] time to give back, people. The book is entering its next edition in 2010. (Our guest blogger Amy Romano is on the editorial team!) Executive Director Judy Norsigian writes: Like other valuable […]

  23. […] have argued (here, here, and here) that strategies that involve increased participation by women and families in […]

  24. Amy Romano says:

    @ePatientDave actually, I already DID guest post about it – remember "low tech models of participatory medicine"? http://bit.ly/3d2vbg

  25. […] what Amy has written about this opportunity: What if we could help a large population of highly motivated, influential […]

  26. […] These responses respect true informed consent.  These responses honor patient autonomy.  And these responses support the sort of participatory medicine that midwife Amy Romano talks about in her recent article on e-Patients.net. […]

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