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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.


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