Are consumers at the bottom of the evidence pyramid?
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.
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.