This interview is the seventh in a series between CFAH President and Founder Jessie Gruman and patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research (CER).
Gruman: Tell me about yourself and your organization.
Maureen Corry: I'm the executive director of Childbirth Connection. Our mission is to improve the quality and value of maternity care through consumer engagement and health system transformation. We are working to promote safe and effective evidence-based maternity care to help women and health professionals make informed decisions and also to inform maternity care policy.
Next year we will celebrate our 95th anniversary as a voice for the needs and interests of childbearing families. Our target audiences are women and families of childbearing age, health professionals and, of course, policymakers and media.
Routine maternity care today is procedure-intensive and costly as exemplified by the high rates of inductions and cesarean sections. Fortunately, most childbearing women are healthy and have every reason to expect an uncomplicated birth, yet things don't always turn out this way. So it's essential to provide women with trustworthy information based on the best available evidence to help them make informed decisions and navigate the complex health care system to achieve the birth that's right for them.
Most pregnant women have a nine-month period to learn about the value of evidence, consider their options, think about their values and preferences, and make informed decisions about their care. It would be ideal if all women had the opportunity to engage with their clinicians in a shared decision making process and make health care decisions together.
At Childbirth Connection we think shared decision making for maternity care should be the norm rather than the exception, and we are working hard to make this happen through a partnership with the Informed Medical Decisions Foundation. Our goal is to extend the benefits of shared decision making to more childbearing women, including those with low health literacy and numeracy, to better align women's care with their informed decisions and reduce unwarranted practice variation in maternity care. We hope these women will then go on to apply the skills they use in making informed decisions about childbirth to their own and their families' care in the future. This is really what patient engagement is all about.
Gruman: Where do you see comparative effectiveness research fitting in the effort to improve the effectiveness of health care?
Maureen Corry: I think it's essential. In the pregnancy and childbirth field, we are lucky to have a huge body of high- quality research available to guide maternity care policy, practice, education and research. Sure, there are still unanswered questions for which we will depend on CER to investigate. You probably know that the Cochrane Collaboration started with the Pregnancy and Childbirth Group more than 20 years ago. There are now hundreds of systematic reviews on various aspects of maternity care. Despite availability, the evidence doesn't always make its way into practice. If we could implement what we know now about safe and effective maternity care, we would see rapid improvements in the quality, outcomes, and value of care for women and babies. Right now there is huge variation in care, outcomes and costs across providers, facilities, and geographic areas. This is an area of professional practice that is ripe for improvement.
Gruman: Tell me how Childbirth Connection views the relationship between CER and patient-centered outcomes research (PCOR).
Maureen Corry: Current research often focuses more on benefits than harms and doesn't adequately reflect the outcomes that matter most to women. Researchers need to do a better job when developing their methods and priorities to include patient-centered outcomes. To date, most of the maternity care research only tracks short term outcomes: what happens right after birth. So there are many long-term outcomes that are overlooked. For example, we know that women feel the effects of their pregnancy and delivery for months afterward.
Our national Listening to Mothers II postpartum survey of women's childbearing experiences found that a large proportion of women had new onset morbidities related to their childbirth experience: e.g., pain associated with C-section that interfered with their ability to care for their newborn, sometimes for many weeks/months; mental health problems like PTSD and depression; and breast-feeding problems, especially among women who had C-sections.
Labor induction is another example. The biggest risk for women of non-medically indicated inductions is cesarean section and for the baby, admission to the NICU for breathing and other problems. Childbirth Connection and other organizations are conducting outreach and education campaigns to inform women about the short- and long-term risks associated with elective delivery and the benefits of waiting for labor to begin on its own if mother and baby are healthy. And of course, unnecessary cesarean section deliveries are another example.
We need to get the best evidence in the hands of women so they understand the benefits and harms of these consequential interventions. The long-term harms associated with repeat cesarean section are frightening, and too many women are unaware: placenta problems, hemorrhage, uterine rupture, low birth weight and maternal death. There's a real need for more PCOR on questions such as: How the considerations about the fetus factor into decision-making? How do women make decisions about a current pregnancy given the major implications for the outcomes of the first birth on subsequent births?
Gruman: Can you give me an example of how your constituents have been affected by CER?
Maureen Corry: Sure. Episiotomy is a great example of putting evidence into practice. We know from best evidence that the routine or liberal use of this practice is not beneficial and exposes women to risk of harm. Fortunately, the rate of use has been steadily declining over recent years and the rate is about half of what it was in the 1980's. There is still room for improvement but we are headed in the right direction.
Gruman: How do you see the increased attention to CER affecting the care your constituents will receive in the future?
Maureen Corry: One of the problems with research in childbirth is that the comparison is never among women who have experienced care that supports, promotes and protects physiologic childbirth. It's relatively rare in U.S. hospitals with the exception of women cared for by midwives in hospitals, out-of-hospital birth centers and at home. Almost all women in U.S. hospitals experience interventions that disrupt the normal biological processes of labor, birth and breastfeeding. When we research effects of tests or treatments in this context, we never compare the effect of the intervention measured against a physiologic baseline.' I am hopeful that CER can address this gap in the near future.
Gruman: Some professionals believe that patients are opposed to comparative effectiveness research. Do you think this is accurate?
Maureen Corry: Yes. To a certain extent I think that's true for some patients. It may be due to lack of understanding about what CER is. None of this is easy. It can't be talked about in sound bites. The public has been alarmed by talk of death panels and rationing and may be afraid of CER because they think it's going to take things away from them in order to save money.
However, a new IOM Discussion Paper, 'Communicating with Patients on Health Care Evidence,' written by members of the Evidence Communication Innovation Collaborative, paints a different picture and is cause for great optimism. Based on results of a national survey, they found that 'patients view evidence about what works for their condition as more important than their provider's opinion or their personal goals and values,' although patients do want all three elements to inform their decision.
An important job of all of us working on building the evidence-base for our disease or population is to communicate to the public and our constituents what it is and is not, and why it's important to them. We can all learn a lot from the work of the Evidence Communication Innovation Collaborative to help us do this better.
Gruman: What are your fears and hopes for CER?
Maureen Corry: I am hopeful that CER will expand consumer/patient engagement in the research enterprise. This will take time and resources in order to allow them to be successful.
If researchers are sincere about engaging childbearing women in the process and incorporating their concerns into protocols and methodologies, it could improve the research. We could get to some of the unanswered questions but we need researchers to really open their minds to include outcomes that are of interest to women.
I realize, of course, that it's also critical to encourage and enable health professionals and researchers to truly engage patients in the process. It's not just consumers that need training and support.
My fear is that researchers won't really do this, that they will just do business as usual. Spending 30 minutes to 'bring the patient into the mix' won't make much of a difference.
I think it is important to note that CER takes us big steps closer to having reliable, accurate evidence on which to base health care decisions. But in the end, our own personal values and the ability to individualize data remain pretty mysterious.
More CER Interviews by Jessie Gruman