Will the NIH Panelists read the blogs and Twitter feeds? And should they?

by Amy Romano, CNM (Originally published on Science and Sensibility for Lamaze International on March 8)

I spent the good part of today glued to the live webcast of the National Institutes of Health Consensus Develop Conference on Vaginal Birth After Cesarean (VBAC). The agenda was packed with expert testimony on the findings of a systematic review of 35 studies involving over 660,000 women with prior cesareans, prepared by the Agency for Healthcare Research and Quality.

So many important findings were presented that I would not begin to do them justice if I summarized them here. What amazed me as much as the incredibly enlightening science, though, was the remarkable involvement of consumers and consumer advocates, many of whom are very savvy users of social networking tools such as blogs, Facebook, and Twitter.

And another interesting thing happened: the NIH Panel acknowledged the bloggers. Gina from The Feminist Breeder posted this picture of a slide from their introduction…

…right around the time that I was tweeting this:

(for the Twitter-naive, FTW is “for the win” and #nihvbac is the “hashtag” for the conference.)

They are right: there is an active blog community on the internet. And we’ve been “actively blogging” about VBAC for several weeks now. The blogging effort was coordinated, too. The International Cesarean Awareness Network pulled together an amazing collection of links to posts all over the internet on the topic of “VBAC as a Vital Option.”

This all got me wondering: have the NIH panelists been reading our blogs? And should they?

The panelists are supposed to be independent and objective (as we have seen, this is rarely if ever the case). But does independence equate with impartiality? And do the rules of impartiality that govern, say, juries in courts of law (eg, don’t google the case!), pertain to independent scientific panels?

Surely they’ve read somewhat if not extensively in the the scientific literature on VBAC. After all, the NIH would want to choose panelists who would be able to effectively do their job: coming to consensus on VBAC, and doing so requires some familiarity with the research and clinical issues. All of those testifying have affirmed that the available literature for nearly every important aspect of VBAC decision-making is “thin,” “scarce,” or “limited” and that major areas for future research include emotional and mental health outcomes, quality of life, long-term health, and impact on mother-infant bonding and breastfeeding. So if the scientific evidence cannot provide answers, what about asking women themselves? Especially those of us who are eagerly sharing our perspectives and personal stories on blogs and Twitter?

I’m interested to hear others’ thoughts on the role (if any) of consumer advocates, connected via social media, on the scientific panels like the NIH meeting.

I have to end it there to take part in a Blog Talk Radio Show with The Feminist Breeder and Debra Bingham, the president-elect of Lamaze International and the Executive Director of the California Maternal Quality Care Collaborative. Tune in!

Are consumers at the bottom of the evidence pyramid?

by Amy Romano, CNM (Originally published on Science and Sensibility for Lamaze International)

I have argued (here, here, and here) that strategies that involve increased participation by women and families in maternity care hold major potential for improving our rather dismal maternal and infant health outcomes.

A study reported in the current issue of The International Journal of Gynecology & Obstetrics highlights a major obstacle to implementing consumer-led health strategies: lack of comparative effectiveness research supporting their use.

The researchers analyzed all Cochrane Systematic Reviews addressing pregnancy, childbirth, newborns, or children up to age five. They categorized each systematic review by the level of consumer involvement versus health care system involvement the intervention required. They found that 62% of Pregnancy and Childbirth reviews, 94% of Neonatal reviews, and 71% of Children’s Health reviews addressed interventions that involved no consumer participation, such as cesarean surgical techniques, or intensive care treatments. Interventions that could be implemented within the community (such as nutritional programs) or that involved woman- or family-centered health care (e.g., labor support techniques, family-centered pediatric approaches) were far less likely to be studied. The researchers concluded:

The vast majority of research is performed on interventions that are solely in the realm of the providers. Maternal and child health research needs to be directed toward innovative interventions involving consumer participation, particularly those that can be implemented in middle- and low-income countries where the accessibility and quality of the health systems are poor.

This study highlights one of the major systemic biases we see in research. When so much of our research comes from academic medical institutions, what happens outside of those institutions – even if it has a far greater potential impact on the health and wellbeing of the institution’s beneficiaries – doesn’t get studied much. Nor do interventions that can happen within institutions (e.g. doula support in labor) but challenge the institutional hierarchy, which too often puts patients and families at the bottom.

One area in which we need far more research is perinatal education. Few studies evaluate strategies to educate, engage, and inform women. In addition, according to a review in the current issue of The Journal of Perinatal Education, even when researchers do evaluate perinatal information giving and education, they tend to evaluate approaches that accommodate medical concepts of efficiency (e.g. leaflets or DVDs) rather than meet women’s own stated needs and preferences (e.g. opportunities to discuss options in depth with their care providers or in small peer groups facilitated by knowledgeable professionals).

Pregnant women and new mothers are avid seekers of health information – online, in childbirth education classes, from health care providers, and in their communities. This natural impulse to take responsibility for their health, connect with other women, and engage in their care is currently being overwhelmed by the application of one-size-fits-all maternity care policies, including mandated cesarean surgery for women with risk factors or more subtle threats to autonomy like restricting mobility, denying access to food and drink, and excluding family members and other support people from care settings.

Empowered, informed, engaged consumers, individually or collectively, can be effective at overcoming these barriers to safe, effective care. In fact, it sometimes seems to be the only force driving meaningful change. Fifty years ago, the American Society for Psychoprophylaxis in Obstetrics (now Lamaze International) helped lead a charge to let fathers into the delivery room and challenged the harmful, demeaning childbirth routines that prevailed as standard practice. Just last month, CNN reported the happy outcome for a woman who avoided cesarean surgery she did not need or want. In advocating for her own care, she has inspired a generation of other women facing vaginal birth bans in their own communities.

Consumers are the least powerful contingent in the health care system, even though our knowledge, attitudes and actions could be the most important influence on our own health and safety. It’s time for major paradigm shifts in research, policy, and practice.

References:

Belizán, J. M., Belizán, M., Mazzoni, A., Cafferata, M. L., Wale, J., Jeffrey, C., et al. (2010). Maternal and child health research focusing on interventions that involve consumer participation. International Journal of Gynecology & Obstetrics, 108(2), 154-155.

Nolan, M. L. (2009). Education and information giving in pregnancy: A review of qualitative research, The Journal of Perinatal Education, 18(4), 21-30.