It is not news that maternal deaths and severe complications are an urgent health problem in the U.S. To date, efforts to address this problem in a consistent and equitable way have proven inadequate. Disparities in outcomes based on race and ethnicity are alarming and persistent. Our approach must shift, and to change course, there needs to be a reorientation of our collective perspective that regards patients as partners in their own health care.
More often than not, poor maternal outcomes can be traced to the three deadly “Ds” – delay, denial, and dismissal. Healthcare workers often dismiss chest pain as heartburn, chalk up brain fog to “pregnancy brain,” or simply ignore women’s intuitions that something isn’t right. In addition, there are healthcare delays in treating concerning warning signs, delays in lab test results, denial that a patient is getting worse and dismissal of women’s concerns. In other words, at the root of many preventable deaths and complications is a disregard for the patient perspective on the part of providers and sometimes patients, themselves. Education is power and shared decision-making between women and their providers is needed. In my lifetime, I’d like to reach the point where I never have to hear another woman or surviving family member lament that outcomes could have been different, “if only I had spoken up or insisted that my concerns be heard.”
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Eleni Tsigas Eleni CEO of the Preeclampsia Foundation and member of the Board of Directors for Preeclampsia Foundation Canada. As a two-time preeclampsia survivor herself, Eleni is a relentless champion for the improvement of patient and provider education and practices, for the catalytic role that patients can have to advance the science and status of […]
I am the Chief Executive Officer of the Preeclampsia Foundation, the national patient advocacy organization for preeclampsia and related hypertensive disorders of pregnancy. We helped drive the bill Preventing Maternal Deaths Act that was signed into law in December 2018. Other organizations that assisted us in in getting the Act signed into law include the American College of Obstetricians and Gynecologists, the Society for Maternal-Fetal Medicine, the March of Dimes and the Association of Maternal and Child Health Programs.
Soon thereafter, we formed MoMMA’s Voices — a broader coalition of patient-led organizations devoted to other leading causes of pregnancy-related death and complications. We are partnering with the Department of Health and Human Services and Premier Inc. on a sweeping, data-driven initiative across the U.S. to improve outcomes among both mothers and infants. It’s a two-part effort that first entails a broad data analysis of obstetric practices and birth outcomes followed by the implementation of evidence-based interventions in a cohort of 220 hospitals.
It’s important to convene a wide variety of patient and family member partners to consider what questions should be asked, what data is being collected and how it is being measured. Later, we will partner with the research and clinical leaders of the initiative to help make sense of the results and translate them into “news you can use” at the community level. For instance, one thing we hear loud and clear from patients of color is that the disparities data is demoralizing and stress-inducing without coherent recommendations for action for providers, health systems, and the larger community in which they live, work, play and pray.
While hospital-based initiatives are important, it is clear that problems surface long before and after delivery. The “prologue” and “epilogue” of the delivery experience is where we can find answers that will save lives. Timely treatment of a patient’s high blood pressure in the hospital is one indicator of care quality, but how did the patient’s blood pressure get so high in the first place and what could have been done to prevent it? A patient recalls the disrespect she felt being brushed off by providers during a prenatal visit when she had questions. Throughout the remainder of her pregnancy, she experiences self-doubt about the legitimacy of her concerning symptoms and distrust of her providers, resulting in communication failures and a higher risk for poor outcomes. A mother and baby are seemingly healthy leaving the hospital after a traumatic birth experience, and later the mother’s PTSD is reduced to a case of “baby blues.” As the patient partner, our goal is to ensure this initiative integrates protocols in the hospital setting to document and account for the patient narrative before, during, and after delivery.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
While the data will be invaluable, we believe that this expanse of data must be optimally interpreted and leveraged through storytelling and the human experience.
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Eleni CEO of the Preeclampsia Foundation and member of the Board of Directors for Preeclampsia Foundation Canada. As a two-time preeclampsia survivor herself, Eleni is a relentless champion for the improvement of patient and provider education and practices, for the catalytic role that patients can have to advance the science and status of maternal-infant health, and for the progress that can be realized by building global partnerships to improve patient outcomes. Eleni has assisted in the development of state, national, and international care guidelines on preeclampsia, including with the World Health Organization (WHO), the American College of Obstetricians and Gynecologists (ACOG) Hypertension in Pregnancy Task Force, the Council on Patient Safety in Women's Health Care, and state task forces in California, Florida, Illinois, Indiana, and Texas. She is frequently engaged as an expert representing the consumer perspective on preeclampsia, including the delivery of keynote addresses for several professional healthcare provider societies.
