Guest post by Diana W. Bianchi, MD, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development and Janine Clayton, MD, Director, Office of Research on Women’s Health
For many of you, this past weekend likely had its share of greeting cards, flowers, video calls, and, perhaps, even a tasty brunch celebrating the special maternal figure(s) in your life. Maybe it was your mother, grandmother, or another special person who always looked out for you when you were growing up. For others, this past weekend may have been bittersweet—a time to remember a mom or someone special who is no longer with you, but who left an indelible mark on your lives, giving you joy, wisdom, and resilience. Mother’s Day is a wonderful holiday filled with love and appreciation.
Sadly, hundreds of children each year in the United States do not get the chance to celebrate Mother’s Day with their moms because of a growing maternal health crisis. In a wealthy nation like ours, a healthy pregnancy and childbirth should be a given, but it’s not. According to the Centers for Disease Control and Prevention (CDC), nearly 700 women die each year from complications from pregnancy or giving birth. In addition, American Indian/Alaska Native and Black women are 2 to 3 times more likely to die from a pregnancy-related cause than white women. The CDC estimates that two-thirds of maternal deaths are preventable.
Understanding and reducing pregnancy-related deaths and complications—or maternal morbidity and mortality—is a high priority for the National Institutes of Health (NIH). In the past year, with an estimated $223 million in funding, Institutes, Centers and Offices across NIH have worked together, and with their federal and community partners, to support scientific research for this crucial endeavor. In a year dominated by both the COVID-19 pandemic and renewed calls to address health disparities and inequities, NIH is facing these challenges head-on and accelerating efforts to reduce maternal morbidity and mortality.
Engaging the Community to IMPROVE Pregnancy Outcomes
Improving maternal health requires strong partnerships with local communities, particularly with racial and ethnic minority populations that experience stark disparities in access to quality prenatal and postpartum care.
To that end, several NIH Institutes held activities to hear first-hand how patient communities can inform future research and what strategies might enhance local efforts. Workshops and forums included:
A common refrain from these discussions reinforced the importance that research conducted within a community should be developed with and vetted by that community to ensure its success. These exchanges informed the development of NIH’s Implementing a Maternal Health and Pregnancy Outcomes Vision for Everyone (IMPROVE) initiative, which aims to build an evidence base that will enhance maternal care and outcomes from pregnancy through one year postpartum. IMPROVE receives funding support from several NIH Institutes and is co-led by NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, the NIH Office of the Director, and the NIH Office of Research on Women’s Health.
To date, the IMPROVE initiative has awarded more than $7 million in grants in research areas related to maternal heart disease, hemorrhage or bleeding, and infection (the leading causes of U.S. maternal deaths); contributing conditions, such as diabetes, obesity, mental health disorders, and substance use disorders; and structural and healthcare system factors that may contribute to delays or disruptions in maternal care.
Pivoting to Address COVID-19
Like GRAVID, studies funded by NIH and others continue to produce data to help inform medical care for pregnant women during the pandemic. For example, the CDC’s V-safe registry collects data on COVID vaccine side effects from people across the country. Their recently published findings show that so far, the vaccines are safe and effective for pregnant women, which is reassuring news to people who are undecided about getting the vaccine.
Many factors contribute to maternal morbidity and mortality, and NIH will continue to fund projects to develop tailored, evidence-based solutions for pregnant women across the country. This year, IMPROVE will fund new research to understand the effects of SARS-CoV-2 infection and the COVID-19 pandemic on maternal mental health, well-being, functioning, and quality of life. These research awards also seek to address the impact of structural racism and discrimination on maternal health outcomes in the context of COVID-19.
Every maternal death is one too many.
We encourage pregnant women to get care as early as possible in pregnancy, and to discuss their health and lifestyle habits with their health care providers. In turn, health care providers (including non-obstetricians) should take a health history that includes recent pregnancies and listen to women, especially if they have health factors that increase the risk of complications.
NIH will continue to advance research to help ensure healthy pregnancies and reduce maternal morbidity and mortality. For researchers, whether you’re studying fundamental science, leading clinical studies, conducting population or social/behavioral research, or developing new technologies, an important opportunity exists to improve maternal health and help families across the country.
What opportunities do you see to improve maternal health in your community?
Dr. Bianchi is a co-lead of the NIH’s IMPROVE Initiative. As director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), Dr. Bianchi oversees NICHD’s research on pediatric health and development, maternal health, reproductive health, intellectual and developmental disabilities, and rehabilitation medicine, among other areas.
Dr. Clayton is a co-lead of the NIH’s IMPROVE Initiative. As director of the NIH Office of Research on Women’s Health (ORWH), Dr. Clayton has strengthened NIH support for research on diseases, disorders, and conditions that affect women.
Writing these blog posts gives me a chance to showcase some of the great work done by our team at NLM, and reflect on the roles I play as part of the NIH leadership team, Director of the National Library of Medicine, a mother-daughter-sister-aunt-friend, and an advocate for self-care management education and support for all people. Yet, nothing compares to the opportunity that this blog gives me to reflect on my chosen profession, nursing.
This year for National Nurses Day, I want to acknowledge the enormous contributions made by all health care professionals in response to the COVID-19 pandemic, particularly by the nurses and members of nursing care teams. I want to express my sorrow and deepest sympathies to the friends, families, and co-workers of nurses who faced health issues or died from work-acquired COVID-19 infections. I am grateful to front line care providers, ranging from nursing home aides to emergency department staff, particularly the nurses whose creative problem solving and attention to complex patient needs helped so many over the past year.
Nurses are well known for their ability to innovate—finding just the right way to make one patient more comfortable or address the respiratory distress of another. The perplexities brought about by the unfamiliarity of the coronavirus infection required innovation at warp speed in nursing units across the country.
I thank you, my nurse colleagues, for what you did over this past year and what you continue to do in the face of tremendous personal risk and self-sacrifice. May your accomplishments give you the strength you need to continue, and your contributions be acknowledged and treasured by those for whom you care.
For my part, I’m not on the front line physically, but the role NLM played this past year was focused on finding ways to support people who are on the front lines of this pandemic. Whether it was providing patient-specific COVID-19 information through our MedlinePlus Connect service, or expanding access to and making available coronavirus-related journal articles to support evidence based practice approaches, NLM has been here for YOU!
We collaborated with publishers to drop paywalls, so that the literature could be available to anyone who needed it. We accelerated processing of genomic sequences to speed up the process of tracking variants and identifying new drug targets. Our team at NLM helped mount the NIH’s response to the COVID pandemic with new research programs, particularly designing advanced data systems to make sure we learn as much from this experience to prepare for the next. While literature cannot provide the comfort of a hug, it can provide ideas that can aid in supporting someone through the process of grief.
My thoughts turn to my nurse colleagues who have witnessed so much death this year—among your patients, co-workers, and communities at large. I extend my wishes for resilience and comfort. I can offer little, but the acknowledgement that your experience of COVID-19 was so different from mine, and the assurance that NLM’s programs of research and offerings of significant literature resources will continue to make available the information needed for practice, and the learning that comes from practice.
In April 2020, as the pandemic was emerging, our colleagues from the United Kingdom offered some helpful hints in this Journal of Clinical Nursing article, one of the freely accessible articles made available through NLM’s Public Health Emergency COVID-19 Initiative. The authors encouraged nurses to address their own psychological and safety needs through peer and team support. This includes looking after each other’s well-being and encouraging temporary and long-standing teams to check-in on each other—particularly at the beginning of a shift, where such contact can activate a sense of social support. The authors also exhort that the stress response to staffing shortages, a sense of futility, and unrelenting grief is normal and will resolve – and yet each person responds differently, so make sure you check in with yourself!
For every one of you who greets each workday with the worry of exposing your family to COVID-19 or putting yourself in harm’s way, I thank you for persisting, and for what you are doing for patients. I trust that the next few months will be a time for resetting your practice to something that is manageable and less fraught with risks.
As we celebrate Nurses Day, we do so with sadness arising from the strains experienced by our profession over the past year, the loss from too many deaths, and the exuberance of the enduring strength of nursing! My hope for Nurses Day 2022 is that our common paths lead to a healthier, safer world.
Please let me know how NLM can join you on this journey.
This month, NLM joins the Nation in celebrating Black History Month. Libraries play an important role in ensuring equity of access to information. From my career as a nurse, I know that libraries are important vehicles for delivering trusted information. To celebrate my dual allegiances to nursing and libraries, in this post, I am tuning into the voices of Black nurses to learn what libraries mean to them.
Black nurses have made huge contributions to the health and well-being of people and are foundational to the health care system as we know it today. Rhetaugh Dumas, PhD, RN, a psychiatric nurse and academic leader, once served as the deputy director of the NIH’s National Institutes of Mental health (1979-1981). Another psychiatric nurse, Chester A. Woffard, III, MSN, RN was a leading thinker in suicidology, particularly addressing the needs of nurses coping with suicide among colleagues. May L. Wykle, PhD, RN, devised critical intervention strategies for caregivers, with particular attention to self-care needs among minority elders. Loretta Sweet Jemmott, PhD, MSN, RN, is an expert in health promotion and created much of the evidence base for HIV risk-reduction interventions. I’ll bet every one of these nurses used (and still uses) the library often!
I asked some nurse colleagues to reflect on the role libraries have played in their professional and personal lives – and look what I learned!
Linda Burnes Bolton, DrPH, RN, FAAN | Senior Vice President and Chief Health Equity Officer | Cedars-Sinai Health System
Libraries have been my constant go-to place for knowledge and skills to support any task I took on. It was important to me to join a profession that would enable me to read, learn, and be of use to other humans — nursing was the answer to my prayers. Reading in the library and collecting journals from around the world was a way to learn about life, humans, and nurture my sense of purpose to be of use to others. Libraries are full of stories about human caring; they are a safe place to gain knowledge and to explore and imagine life’s possibilities. I treasure my memories of being in the aisles of public and private libraries in schools, after school, and now accessing the wise words and secrets held by libraries electronically.
Sheldon D. Fields, PhD, RN, CRNP, FNP-BC, AACRN, FAANP, FNAP, FAAN | Associate Dean for Equity and Inclusion Research Professor | The Pennsylvania State University College of Nursing
As a healthcare professional who is also a researcher, educator, and health policy specialist, I have leveraged the resources of the NLM many times. As an HIV prevention research scientist, I rely heavily on the biomedical literature databases such as PubMed to keep up to date on the research literature and for dissemination of my own work. As a nursing educator, the NLM training resources and courses on how to use various databases, as well as resources such as MedlinePlus and DailyMed for drug information have been most beneficial in my work with nursing students. The NLM supported National Information Center on Health Services Research and Health Care Technology is also a reliable source for all things health policy related. Having such reliable, up to date, and accessible resources from the NLM is critically important to all facets of my career.
Paule V. Joseph, PhD, MS, FNP-BC, CTN-B, FAAN | Lasker Clinical Research Scholar Tenure Track Investigator | NIH Distinguished Scholar | Acting Chief, Section on Sensory Science and Metabolism Unit (SenSMet) | Division of Intramural Clinical and Biological Research (DICBR), National Institute on Alcohol Abuse and Alcoholism (NIAAA) | Biobehavioral Branch, National Institute of Nursing Research (NINR)
During my PhD program, I realized how critical the library and librarians were in my scientific journey. The librarian at the UPenn Biomedical Library — who was also a nurse — played a crucial role in my PhD trajectory. It was the first time I had met a nurse who was also a librarian, and her intimate knowledge of nursing and the scientific literature helped me a lot. In my role as Principal Investigator, the librarians at NIH have been integral to the development of my lab as I have developed my clinical protocols and conducted literature searches for systematic reviews and meta-analysis. I have even co-authored papers with them. In addition, they are always available to train and share new tools to streamline the research process. The librarians have been very helpful in teaching the fellows and students in my lab about databases and guidelines to conducting reviews. When COVID-19 started and reports about COVID’s toll on taste and smell began to emerge, the NIH librarian (who knew what my lab studied) reached out and helped us tremendously by curating the literature on that topic. I am still using those resources as I develop a COVID-19 taste and smell long-hauler study.
Beverly Malone, PhD, RN, FAAN | President and CEO | National League for Nursing
As a nurse working on my doctorate, I had the opportunity to spend a summer in Washington, DC working with a Senator on many health-related issues. During that time, the Library of Congress became my refuge as I worked on my dissertation section on leadership and mentoring. Resources from the Congressional Library helped me understand the power of mentoring and recognize that nurses were sometimes left behind in terms of the mentoring process. Throughout my career, I’ve been inspired by the graciousness and generosity of spirit in people saying, “I see something in you that perhaps you can’t see in yourself.” But I know that I have been able to recognize this through what I learned at that beautiful, wonderful place called the Congressional Library. The library is where the literature revealed secrets to say, “Look at how fortunate you are to have been mentored all of your life.”
Monique Powell, MSN, RN | Nurse Manager, Cardiac Intensive Care Unit | Children’s National Medical Center
I think back on my freshman year at Howard University and one of the most memorable moments occurred in the Founders Library. I remember the first time I walked through the doors I felt this incredible sense of belonging and history. The library was named Founders in honor of the 17 men that help to found Howard University. This building holds an incredible collection of history for African Americans, and I felt privileged to be able to sit down at the tables and walk through the stacks of books. I had an assignment to research how the African American community has interacted with the medical community. As I researched this topic and used the microfiche machine to view documents, papers, and letters, I remember feeling that I had access to history in a way that I never had before. I remember coming across a personal check signed by Ruby Dee and Ozzy Davis sent to the Howard University School of Medicine to support the students — a piece of history that still moves me so many years later. My experience that day has stayed with me and encourages me to continue the work I am doing in health care and for my community. I am a proud graduate of an Historically Black College and University and feel honored to be able to serve my community as a nurse.
Asia L. Reed MSN, RN, CPN | Professional Development Specialist | Nursing Education and Professional Development | Children’s National Medical Center
The library has helped shape my educational destiny in so many ways. I have appreciated the academic library both online and in-person throughout my undergraduate and graduate nursing programs. The library offers free educational resources, caters to specific research needs, provides space for meeting with others, and supports personal and professional growth. Having recently graduated with my master’s degree in nursing education, the library contributed to my success by providing access to a variety of education resources and online databases that supported my needs. The articles I chose were directed toward my learning styles, which had a positive impact on my academic achievements. As a novice nurse educator, the library continues to play an important resource in my career path and for my pediatric nurse residents.
Reneè Roberts-Turner, DHA, MSN, RN, NE-BC, CPHQ | Director, The Department of Nursing Science, Professional Practice, and Quality Magnet® Program Director | Children’s National Hospital | Assistant Professor of Pediatrics | The George Washington University School of Medicine and Health Sciences
What I always loved most about being in the library is the quiet and calm I felt as soon as I walked through the doors. During my senior year of college, my mentor (who was an employee within the University of Virginia Wise Library) heavily influenced my decision to use my bachelor’s degree in Biology to pursue Nursing instead of medicine. I spent many hours reading about healthcare careers, in various books and journals, reading articles using the microfiche machine, and concluded Nursing was the profession for me. I also spent a significant amount of my time at Marymount University’s Emerson G. Reinsch Library, where I was introduced to the Washington Research Library Consortium and benefitted from the ability to borrow materials from other academic libraries in the Washington, DC area. As I pursued my doctoral degree via online classes, I felt the same satisfaction with the electronic library format. Although I’m not physically in the library, whenever I log on to the electronic library, I still feel a sense of quiet calmness.
Linda D. Scott, PhD, RN, NEA-BC, FNAP, FAAN | Dean and Professor | University of Wisconsin-Madison School of Nursing
Those who knew me as a child can attest that I always wanted to be a nurse. My earliest professional inspiration was Florence Nightingale, whom I mimicked as I provided nursing care to my dolls and even tried to replicate her uniform by wearing a blanket that served as a cape. My information came from books through my neighborhood Bookmobile. An astute Bookmobile librarian noted my hunger for learning and encouraged me to explore more about nursing at the public library. That’s where I learned a more complete history about the nursing profession and discovered a wider representation of nurses, including some who looked like me. Learning about Mary Eliza Mahoney and Mary Elizabeth Carnegie, and later Hattie Bessent and Rhetaugh Dumas—along with other nurses of color whose footprints are evident in the profession—turned my emulation of the nurses I admired into a belief in the possibility for myself. Library resources have not only been invaluable to me throughout my education and career, but they helped me see myself on the “path we tread.”
Ora Strickland, PhD, RN, FAAN | Dean and Professor | Nicole Wertheim College of Nursing & Health Sciences | Florida International University
I remember my parent’s library. It had encyclopedias, short stories, poems, and even medical books. Whenever any of us got sick, my mother would run to her medical books, and I took notice. All those books piqued my interest in becoming a nurse. Throughout my career, I’ve found that university libraries serve nurses very well because the librarians are good. I’ve been fortunate to frequent university libraries where librarians collaborate with the schools of nursing to set up library committees to review the library holdings in health care and related fields to make sure that their holdings are adequate and address the needs of nursing students. One library I have visited often throughout my career is NLM. I’d spend hours and hours at NLM; it’s a wonderful place. I also met some real scholars when I was at NLM. That’s what I miss most with the rise of the internet – because a library is also a community meeting place. It’s a place to meet other wonderful scholars and some of those scholars can end up being collaborators.
Retired Rear Admiral Sylvia Trent-Adams, PhD, RN, FAAN | Senior Vice President and Chief Strategy Officer | University of North Texas Health Science Center at Fort Worth
During my graduate education, particularly my doctoral program, libraries became my lifeline and my “go-to” place to help me problem solve and find resources that I couldn’t identify myself. Librarians gave me ideas that I hadn’t thought of and became my alternate support system outside of my department – and outside of my profession. Libraries have been very integrated into all the work I’ve done and the positions I’ve held throughout my career. Librarians deserve a lot of credit for my academic and professional success.
Mia Waldron, PhD, MSN-Ed, NPD-BC | Nurse Scientist, Nursing Science, Professional Practice & Quality | Children’s National Hospital | Assistant Professor of Pediatrics | George Washington University School of Medicine and Health Sciences
Libraries were a steady feature in my life. I spent childhood summers in the Brooklyn Public Library reading fiction; I worked as a clerk in the Cardozo Law Library as a teen; and decided on the sorority to join based on histories read at the Schomburg Library. The decision to change my college major from pre-medicine to nursing was made after poring over career data found in the health sciences library over 30 years ago. The importance of knowledge, as a nurse, has proven invaluable throughout my career. In most instances, my first instinct is to turn to a library.
What a journey! Libraries are shaping the future of nursing and health care, and these nurses give us a glimpse into how all libraries, including the NLM, resonate with the dreams of nurses and provide support and skills to move forward in practice.
I am grateful to my colleagues for sharing their perspectives, and so proud of what the merging of these two forces — nursing and libraries — bring to the health of the world!
How have libraries influenced you and your career?
Guest post by Maryam Zaringhalam, PhD, National Library of Medicine Data Science and Open Science Officer and Mike Huerta, PhD, director of the Office of Strategic Initiatives and associate director of the National Library of Medicine.
In October 2019, NLM invited award-winning science journalist Angela Saini to discuss her research on how bias and prejudice have crept into science. Her lecture examined how racist and sexist ideas have permeated science over its history — and how science, in turn, has been contorted to justify and perpetuate pseudoscientific myths of innate inferiority. Saini’s work and insights sparked a crucial conversation within NLM about our role and responsibility as the world’s largest biomedical library and a leader in data science research, situated within the nation’s premiere medical research agency, to question how systemic biases affect our work and determine how we can correct them.
As advancing equity and rooting out structural discrimination in science and technology have become an increasingly urgent federal priority, NLM will build on this discussion, in part, by announcing the launch of an annual NLM Science, Technology, and Society Lecture on March 1, 2021.
Situated at the nexus of the NIH-supported research community and the public, NLM plays a vital role not only in advancing cutting-edge research, but also in acting as a steward of biomedical information in service of society. As leaders in facilitating and shaping the future of biomedical data science, we must understand the implications of our work for society as a whole. We must, for instance, question how biases may creep into algorithms that connect research results with the public and think through the ethical ramifications of emerging technologies that might reinforce and amplify those biases. As a national library, we serve as curators of the history of biomedical science, which must reflect both the great achievements made possible by research and the injustices committed within the scientific community. And as an institution with more than 8,000 points of presence through our Network of the National Library of Medicine, we have the means to fulfill our responsibility to meet the needs and understand the concerns of the communities we serve.
With these responsibilities along with NLM’s unique role and capabilities in mind, the NLM Lecture on Science, Technology, and Society Lecture aims to raise awareness around the societal and ethical implications of the conduct of biomedical research and the use of advanced technologies, while seeding conversations across the Library, NIH, and the broader biomedical research community. NLM sees such considerations as fundamental to advancing biomedical discovery and human health for the benefit of all.
Each spring, we plan to invite a leading voice working at the intersection of biomedicine, data science, ethics, and justice to present their research and how it relates to the mission and vision of NLM, as well as NIH more broadly. This year, we are pleased to host Dr. Kate Crawford, a leading scholar of science, technology, and society, with over 20 years of experience studying large scale data systems and artificial intelligence (AI) in the wider contexts of history, politics, labor, and the environment. Her lecture, “Atlas of AI: Mapping the social and economic forces behind AI”, will explore how machine learning systems can reproduce and intensify forms of structural bias and discrimination and offer new paths for thinking through the research ethics and policy implications of the turn to machine learning.
As the interests, priorities, and concerns of our society continue to evolve, particularly in response to emerging technologies and shifting national conversations, we hope this annual lecture, alongside established lecture series such as NLM History Talks, will provide an invaluable perspective on the societal implications of our work and further establish NLM’s leadership as a trusted partner in health.
Dr. Zaringhalam is a member of the Office of Strategic Initiatives and is responsible for monitoring and coordinating data science and open science activities and development across NLM, NIH, and beyond. She completed her PhD in molecular biology at Rockefeller University in 2017 before joining NLM as an AAAS Science and Technology Policy Fellow.
Dr. Huerta leads NLM in identifying, implementing, and assessing strategic directions of NLM, including at the intersection of data science and open science. In his 30 years at NIH, he has led many trans-NIH research initiatives and helped establish neuroinformatics as a field. Dr. Huerta joined NIH’s National Institute of Mental Health in 1991, before moving to NLM in 2011.
Today, our country honors the birth, life, and dream of Dr. Martin Luther King, Jr.
Recently, I had the opportunity to take my mom to visit the Martin Luther King, Jr. Memorial in Washington, DC. We observed social distancing and mask wearing. While the weather may have been chilly, the atmosphere was filled with warmth and with hope.
Mom and I walked through the Mountain of Despair to the Stone of Hope and read many of the phrases chosen by a special “Council of Historians” to reflect Dr. King’s life and teachings of justice, democracy, hope and love. I was grateful that someone who is such a giant to me and so many others all over the world held perch as a monolith overlooking the Tidal Basin, facing the Lincoln Memorial and the Jefferson Memorial, with the Washington Monument in sight. I was most struck with the rendering of Dr. King’s gaze, which looked not out at the monuments to great leaders, but directly towards the people milling below the statue – looking at those left to continue his legacy.
This is a special place for contemplation and reflection. Dr. King’s words, “Out of a mountain of despair, a stone of hope” seem particularly relevant today as we move through the global COVID-19 pandemic. There are many reasons to despair – economic problems, health challenges, and loss of loved ones. As Director of the National Library of Medicine, I often think about how we can keep our scientists and society strong by serving as a stone of hope. NLM provides high-quality information to help researchers advance their understanding of the SARS-COV2 virus (the virus that causes COVID-19), and discover new vaccines and treatments. We provide relevant, evidence-based, and actionable information for the public to guide their everyday health behaviors.
As I read one of the inscriptions, I was struck by a parallel to contemporary expressions about how to overcome the consequences of the pandemic and the role we can play to advance change. Dr. King said in a 1968 speech that “the arc of the moral universe is long, but it bends toward justice.” While not specifically speaking of the moral universe, how many times during this pandemic have we heard about the importance of bending the curve of new coronavirus cases? I was struck both by the visual cue of a bending curve, and the idea that caring for the health of the public, through information and individual action, aligns well with the concept of the moral universe.
I take pride in the fact that NLM and its research and information services – at their core —are of service to the public. I hadn’t quite thought of our efforts as part of the moral universe. Thanks to an inspirational visit honoring a beacon of light, I have found new meaning in the work that we do for science and society.
What inspires you? What broader purpose have you found in your efforts?