We’re pleased to present another guest post by Amy Romano, which first appeared on the phenomenal maternity blog Science and Sensibility. See also her newest post, last night, here – including a terrific BlogTalkRadio interview in which she expresses herself on the virtues of Participatory Medicine.
I have argued (here and here on e-patients.net, and here on Reproductive Health Reality Check) 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 February 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.
There are a couple of issues here. First of all, there’s money. You need to identify who will benefit from proving what you want. Unfortunately, if it sells no drugs or generates no new billable services, you are fairly limited. The way to do patient-centered medicine is to establish patient-centered research groups at universities, where they understand how to get grants from NIH and AHRQ, both of whom are likely to fund research even if it makes no one a profit. Alternatively, you could look for funding from an insurer, but they generally have little experience with funding science.
The second problem is that allied health professionals (and patients) often have little experience with grant writing, and may have limited access to mentors. It is amazing what an advantage a well-written grant has over a poorly written one. A well-written grant describes, in detail, a scientific process that leads to generating the data necessary to support (or refute) a hypothesis. The importance of the work or the magnitude of the problem are often not considered in study sections, instead reviewers focus on the quality of the proposal and the likelihood that successful execution will result in advancing knowledge.
Patients and allied health providers need to disrupt the system from the inside, rather than agitate from the outside. Take the time to figure out how to write a winning grant. If you think that the medical staff at your local medical center might not be interested in your work, why not enlist a well-respected biostatistician? NIH generally wants to fund the best science and collect the best evidence. They will support you if you take the time to figure out how they want to be asked.
Thanks Pete for your thoughts. I agree that agitating from the outside isn’t going to fix the problem. I’m on faculty at the Yale School of Nursing, which is one of the leaders among nursing programs in NIH funding. When I get depressed about how we don’t have enough patient-centered research, I think about some of the brilliant nurse-researchers at my institution who are innovating patient-centered approaches in cancer, diabetes, obesity, and palliative care to name just a few. (I’m not one of them – I just teach).
I think we also need structural changes in how budgets for funding research are determined. Dave’s “Patient in Chief” concept might move the needle on that one.
I appreciate your idea about consumers aligning with researchers. Do you have an example of a university that has this kind of consumer involvement in research plans or grant-writing?
Great discussion. After working in maternity care for 16 years, I now work full time on patient safety advocacy and policy work.
I feel that the big missing piece in getting consumers/patients engaged is the lack of available healthcare outcome data provided to patients. We need laws that will require hospitals and the agencies that collect this data (AHRQ) to make it available to the public.
New Jersey recently passed legislation that will allow this kind of data-driven patient empowerment…they passed legislation that allows the state to publicly post the outcome data that is fed into AHRQ by hospitals (complication rates, mortality, patient safety indicators, etc,).
If women/their families could compare hospital induction, cesarean, complication, VBAC, and infant/maternal mortality rates, they would be more engaged. But hospital association lobbyists have effectively blocked this data from being made public in many states.
The US maternal mortality rate is increasing and it is directly associated with the increase in surgical birth since 1995 (CDC). The Joint Commission recently posted a sentinel event alert on this topic (http://www.jointcommission.org/SentinelEvents/SentinelEventAlert/sea_44.htm).
Patients can only be empowered when they have good data from which to compare hospitals and providers. This is especially true in maternity care. The challenge is shaking the data loose from the tight grip of providers/hospitals/insurance companies & the government (AHRQ).