By Caitlin Sullivan ~
Despite many advances in public health and medical care between the mid-1800s and the mid-twentieth century, health care for women and research into women’s health issues has historically lagged behind that for men. It wasn’t until the women’s rights movements of the 1960s that the entrenched inequities of care, access, and research started to surface at a national level; over the next several decades (and at the behest of vocal advocates), the research, medical, and policy communities responded, with various levels of success.
Today, many of those inequities remain. There are several issues that require more effective support through better treatment, advance screenings, and deeper education—from heart disease, to cancer, to maternal morbidity and mortality, to reproductive care, and more. The National Institutes of Health (NIH) supports full-spectrum science on these issues through the Office of Research on Women’s Health as well as through the research efforts of several other institutes. These initiatives aim to develop and support a wide range of programs and policies to improve health outcomes for women in all stages of life with a focus on women of understudied, underrepresented, and underreported populations, as well as a focus on sex and gender influences in health and disease and women’s health equity.
The National Library of Medicine (NLM) continues to expand and develop its digital collections on women’s health. As part of this effort, NLM collects and archives web content documenting current topics in health and medicine in line with the Library’s Collection Development Guidelines, including on Reproductive Medicine, Obstetrics, Maternal and Child Health, HIV/AIDS, Gynecology, Psychology, Cardiology, and more. NLM considers websites, blogs, social media and other web content to play an increasingly important role in documenting the scholarly biomedical record and illustrating a diversity of cultural perspectives in health and medicine.
In 2023, the NLM Web Collecting and Archiving Working Group began a new effort to document the landscape of organizations, programs, and advocacy efforts that exist to address current issues in women’s health as part of a new Women’s Health web archive. Subject areas include reproductive care, maternal morbidity and mortality, heart disease, mental health, cancer, aging, and health disparities, among others. There are numerous government and non-government organizations with a strong web presence that focus on improving health outcomes for women, whether through training, prevention, research, education, connection, or policy development. Many of these organizations serve as online information hubs or as advocates for specific issues (or both). The websites of these organizations have immense historical value and are critical to understanding the full landscape of contemporary issues in women’s health. Documenting their web presence ensures that their efforts are captured in the historical record.
Maternal health is a significant public health concern in the U.S. According to the Centers for Disease Control and Prevention (CDC), a woman dies of complications from pregnancy or giving birth every 12 hours on average. The Eunice Kennedy Shriver National Institute of Child Health and Human Development defines maternal morbidity as “any short- or long-term health problems that result from being pregnant and giving birth,” while maternal mortality “refers to the death of a woman from complications of pregnancy or childbirth that occur during the pregnancy or within 6 weeks after the pregnancy ends.” Recent research has confirmed that maternal mortality rates are significantly higher among Black and American Indian/Alaskan Native people.
There are many excellent organizations focused on addressing these issues. NLM’s new Women’s Health web archive represents a focused selection of efforts that exist nationwide to combat poor health outcomes for mothers. Sista Midwife Productions is a birth advocacy training and consulting agency with the mission of improving pregnancy and birth experiences. Their mission is to eliminate perinatal disparities by increasing the number of Black birth workers, teaching families about their rights and options, and creating accountability within childbirth education. They also host the largest and most comprehensive online directory of black birth workers in the U.S., which is searchable by city and state.
Changing Woman Initiative centers the reproductive care needs of Native American women by renewing indigenous birth knowledge and integrating cultural practices into prenatal and postpartum care. The organization seeks to help its communities reclaim their cultural identities through the experiences of birth and motherhood. While Changing Woman Initiative’s current focus is to provide culturally integrated healthcare for the Native American women and families in the communities they serve, future efforts are focused on developing a culturally centered reproductive wellness and birth center for birthing, healing, and education.
The Women’s Health web archive also captures efforts by federal organizations to address maternal health issues. One such example is the Hear Her Campaign run by the CDC. The campaign seeks to raise awareness of urgent maternal warning signs during and after pregnancy and improve communication between patients and their healthcare providers.
Heart disease is the leading cause of death for women in the United States, according to the CDC. Women sometimes experience heart disease differently than men: for example, women are somewhat less likely than men to experience chest pain, and more likely than men to have no symptoms of heart disease at all. These differences are significant as they can delay identification and treatment of the disease.
WomenHeart was created by three women in 1999 who had heart attacks while in their 40s and faced challenges such as misdiagnosis, inadequate treatment, and isolation. Since then, WomenHeart has focused on patient support through its many successful programs. These include a national network of patient support groups, one-on-one peer support through its SisterMatch initiative, training programs for heart disease survivors to become community educators, advocacy work at the national level, and multiple education initiatives to inform women about heart disease risk factors, symptoms, and treatment options.
The National Heart, Lung, and Blood Institute (NHLBI) at NIH supports research, improved treatments, and education around women’s heart health. Their website includes a variety of resources to help diagnose and prevent heart attacks, as well as promote heart health at every stage of life.
Mental health is a common and serious issue for women in the United States. More than 1 in 5 women in the U.S. had a mental health problem such as depression, post-traumatic stress disorder, or an eating disorder in the last year, according to recent studies. Another study showed that about 1 in 8 women in the U.S. who’d had a recent live birth experienced symptoms of postpartum depression. Mental health is an important focus of HHS and NIH initiatives.
Therapy for Black Girls is an online space supporting Black women in their mental health journey. The website includes a “Find a Therapist” feature which allows users to search for providers in their city and state, or providers who offer virtual therapy options. Users can narrow search results by facets such as whether the provider can prescribe medication, is currently accepting new clients, offers group therapy, or offers virtual options.
There are several federal agencies that provide resources and support for groups of women who may face unique mental health challenges. The U.S. Department of Veterans Affairs supports women veterans with mental health services that address issues such as post-traumatic stress disorder, military sexual trauma, depression, readjustment, and substance abuse disorders.
The National Library of Medicine began its web collecting efforts in 2009, with a focus on collecting around contemporary issues in public health, including topics such as COVID-19, the opioid epidemic, HIV/AIDS, environmental health, and more. NLM will continue to develop, review, describe, and add content to the Women’s Health web archive, and welcomes recommendations for additional content to include or aspects to consider. Is there an organization you would like to recommend for inclusion in this web archive? If so, please submit recommendations to firstname.lastname@example.org. For more information about NLM’s Web collecting efforts, please visit https://www.nlm.nih.gov/webcollecting/.
The NLM Web Collecting and Archiving Working Group includes Delia Golden, Christie Moffatt, Susan Speaker, Caitlin Sullivan, and Kristina Womack. This collection was developed with valuable contributions from History Associates Incorporated archivists Marielle Gage, Margaret Long, Katie Platt, Shirleon Sharron, and Erica Williams.