A Mother’s Day Message: Time for Action to Improve Maternal Health

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. 

Looking Ahead

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.

Thank You, My Nurse Colleagues

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.

Data Science @ NLM Journey Continues and What We Have Learned!

Guest post by the Data Science @ NLM Training Program team.

As part of our effort to advance Goal 3 of the NLM Strategic Plan (“Build a workforce for data driven research and health”), NLM launched the Data Science @ NLM (DS@NLM) Training Program in 2019 to help ensure that all staff are prepared to engage with and participate in NLM’s developing data science efforts.

Our efforts have stayed on track despite the changes caused by the COVID-19 pandemic, and we’re proud to highlight DS@NLM events held during the past year. We’re also sharing lessons learned throughout the training program, which are applicable to any individual or organization trying to help develop data science skills in the fields of health and biomedical information.

Earlier this month, we marked two years of the DS@NLM Training Program with a Spring Fling series of virtual events celebrating the data science training achievements of NLM staff.

Our Spring Fling kicked off with “lightning talk” presentations featuring several graduates of our intensive Data Science Fundamentals course, who shared their final class projects with NLM colleagues. Participants in our year-long Data Science Mentorship program also had the opportunity to present their Capstone projects. Our program mentees, who were mentored by NLM staff members, developed their data science skills by completing projects that applied data science techniques to help improve NLM operations.

What We’ve Learned:

Be responsive to specific needs; one size does NOT fit all.

Data plays a role in virtually everything we do at NLM, and as we aim to provide data training opportunities for staff working in many different areas, we recognize that different staff members have unique training needs. New training opportunities for some staff, such as our researchers, may hinge on their knowledge of machine learning. Metadata specialists may have more need for data cleaning or text processing skills, while administrators may benefit more from learning about data visualization.

People also learn in different ways, be it through shorter webinars and workshops, longer intensive courses, or self-directed learning. The DS@NLM program provides a variety of activities to meet these needs, including opportunities for various skill levels and topics, from short webinars to on-demand classes to ten-week intensive training courses.

Be responsive to staff feedback; give people what they ask for.

To help us determine what to offer, we engaged directly with our audience, asking NLM staff what they needed and listening to their responses. Because of the wide variety of work done at NLM, receiving feedback from staff helped us better understand their specific training needs. While we cannot always offer individualized programs to meet every need, staff feedback always helps us discover new ideas for future programming.

Teaching skills is just the beginning; applying new skills is essential.

A key lesson learned from staff feedback is that teaching new data skills is important, but that’s not enough on its own; teaching how to put newly acquired data skills to use in the real world or applying it to their work is just as important. Helping staff learn to apply data science techniques to their work transforms this new knowledge from theoretical to practical. The Data Science Mentorship Program, with its concluding Capstone project, is a great example of an opportunity for staff to both develop skills and practice applying them.

We applaud and celebrate all the hardworking staff from across NLM who have taken advantage of these training opportunities to advance the goal of building a workforce for data driven research and health, both at NLM and throughout the biomedical and health sciences information world.

Share with us and others how you are helping your staff apply data science skills in your organization—do you have any lessons learned?

Data Science @ NLM Training Program team
 
Top Row (left to right)
Dianne Babski, Associate Director, Library Operations
Maria Collins, Data & Systems Liaison, Office of the Associate Director for Library Operations
Peter Cooper, Strategic Communications Team Lead, National Center for Biotechnology Information

Bottom Row (left to right):
Mike Davidson, Librarian, Office of Engagement and Training, Division of Library Operations
Lisa Federer, NLM Data Science and Open Science Librarian, Office of Strategic Initiatives
Anna Ripple, Information Research Specialist, Lister Hill National Center for Biomedical Communications

Into the future: What NNLM has in store

Guest post by Martha Meacham, MA, MLIS, NNLM Project Director

It’s a time of transformation and growth for the NLM’s Network of the National Library of Medicine (the Network or NNLM). Throughout its 61-year history, the Network has excelled at reaching people in communities throughout the United States. Today, the Network comprises more than 8,800 academic health science libraries, hospital, and public libraries and community organizations. NNLM has endured because of its ability to adapt and respond to changes in support of its mission to advance the progress of medicine and improve public health by serving librarians, researchers, clinicians, and the public. Today, approximately 90% of the U.S. population lives in a county with at least one NNLM member, and 93% of minority populations in the U.S. lives in a county with at least one NNLM member.

Leveraging the strength and expertise of its member organizations, NNLM offers funding for community-based projects that improve access to health information, increase engagement with research and data, expand professional knowledge, and support outreach that promotes awareness and use of NLM resources in local communities. Through the extraordinary work done by Network staff, NNLM has successfully developed and demonstrated effective engagement strategies in communities across the country. For example, the recently funded project “Surviving COVID-19, In A Virtual World” partnered with a local beauty salon to educate, train, and inform the community about COVID-19 and ways to prevent contracting and spreading the disease. The “Combatting COVID-19 Misinformation with Health Literacy Microcontent” project involved working with a community-based organization to provide easily accessible, culturally appropriate “microcontent,” short-form imagery and video content that can be consumed in 10-30 seconds or less, aimed at dispelling misinformation around COVID-19 and vaccines. And the “Informacion para tu Salud en tu Casa” project involved working with a local non-profit organization to improve the health and wellbeing of the Hispanic community by providing health information and resources, and by connecting people to health services through community health workers.

Strengthening the Network’s reach and impact requires continued evaluation and improvement. This includes reassessment of NNLM’s Regional Medical Libraries (RMLs). RMLs coordinate the operations of regional and national programs, as well as ensure a continuity of quality service for core programs of the NNLM.

Over the years, NNLM has evolved from a maximum of ten institutions serving as RMLs, to the long held eight RMLs, and now to a new configuration of seven RMLs.

This reorganization reconfigures regions and reduces disparities between regions in two ways:

  1. Total population served
  2. Number of member libraries and organizations supported

Balancing the regional areas of coverage and populations served allows for deeper connections and greater impact. Also, in addition to our traditional library partners, NNLM membership has expanded to include a wider variety of community-based organizations including faith-based organizations and K-12 schools, among others. As of April 2021, nearly 40% (3,482) of the total number of NNLM member organizations are not what we would have traditionally called libraries. This diversity supports NNLM’s new goal to “advance health equity through information,” with a focus on serving underrepresented populations.

RMLs will meaningfully engage with current and future audiences to increase information access, prioritizing underrepresented populations, including those experiencing health disparities by nature of race and ethnicity, biological sex, gender identity or expression, and sexual orientation, cognitive and physical abilities, religious background or identification, socioeconomic status (past and current), education level, health literacy, and linguistic needs, geographic location including underrepresented populations from medically underserved areas, and other factors that create unequal access to health care. The Network is positioned to address health inequities that contribute to health disparities.

NLM is committed to addressing the challenge of health disparities and seeks new ways to provide understandable and trusted health information resources in a variety of ways to support diverse and underserved populations.

A number of creative projects are underway to support NNLM’s new goal.

Working with medical professionals in various specialties, NNLM’s “Educating Healthcare Professionals and the Sighted Community of Worcester County on the Health Disparities among VIPs 2020-2021” project seeks to improve health literacy and reduce health disparities for individuals who are blind or who suffer with low vision.  ‘Kina (Together)’ is a program serving Native Americans (Ojibwe) in northern Minnesota, and “Unidos en Nuestra Salud – Providing Capacity Building to our Community Members as Well as Public Health Education Regarding COVID-19” provides health education and health literacy skills to the Spanish-speaking community including, but not limited to, health information intermediaries such as librarians, community health workers, public health professionals, and community members that represent medically underserved populations.

For more than 60 years, NNLM has provided a trusted local platform for community outreach and engagement to promote health. As we look to the future, new possibilities and an agile approach will maintain, build upon, and grow this successful and valued program.

Martha Meacham is the Project Director of NNLM. Martha is a passionate advocate for improving the health of all through access to and understanding of health information.

A Peek into the Inner Workings of NLM’s Health Information Services

Guest post by Dianne Babski, Associate Director for Library Operations at NLM

How does an organization like NLM build and deploy 21st century products and services to support a global user audience? I’d like to give you a behind the scenes glimpse into NLM’s ever-evolving operations, and how we continue to develop the health information resources that you know and love, such as MEDLINE/PubMed, Medical Subject Headings (MeSH), and MedlinePlus.

Agile Product Development

NLM continues to move towards agile product development and digital unification. Where we used to release enhancements and features once or twice a year, we now develop incrementally and release product enhancements frequently. NLM supports innovation in our workforce by empowering product owners to make data-driven decisions through usability reviews and analytics of features, page views, and user requests to inform future actions.

We encourage staff to ask, “Are we meeting users’ needs—now and into the future?”

We have seen the success of this approach in the rollout of DOCLINE, our interlibrary loan request routing system, and the redesign of PubMed. We are in the planning phase of modernizing our flagship clinical trials registry and repository, ClinicalTrials.gov, to deliver an improved user experience on an updated platform to accommodate growth and enhance efficiency. We also embarked on the recommendations of several studies to increase the automation of MEDLINE Indexing. This involves incorporating machine learning and computational algorithms to apply MeSH terms to PubMed citations. As a result, the time for MEDLINE citations to be searched as indexed with MeSH in PubMed will be dramatically reduced, and, more importantly, will better leverage NLM staff expertise around chemical and gene names to enhance discoverability.

Data-Driven and Data-Informed

NLM uses data to balance our portfolio of products and offerings. I like to use the analogy of thinning garden beds to make room for healthier and stronger plants.  We created evaluation measures to review our products and services, which allow us to make data-driven and data-informed decisions to streamline, simplify, and optimize NLM’s portfolio of offerings.

NLM Herb Garden

One key principle is to consolidate information into fewer platforms for improved user experience, discoverability, and efficiency. Pruning our garden allows us to focus on products that are unique, high-quality, and trusted resources. I think we can all agree that it’s more difficult to find what you need when information is scattered and disparate. This has informed the retirement of some products that are no longer sustainable or have a succession plan, or low or declining usage. And while a product may no longer exist as a stand-alone product, we have ensured that data and information from those products are integrated into others, made available for download, or both. For example, by integrating Genetics Home Reference and GeneEd data, we enhanced and made MedlinePlus more robust.

Other agencies or organizations sometimes have equally sufficient information and resources available that duplicate efforts. For example, this is true for the resources held in our Disaster Information Management Research Center (DIMRC), which we have begun retiring by limiting updates to select resources, such as Disaster Lit. This resource is currently only updated with COVID-19-related information as the product (or data) transitions ownership to other organizations. Meanwhile, much of the grey literature from Disaster Lit will remain available in the Digital Collections or the NLM Bookshelf.

To help users navigate NLM collections, we are upgrading our Integrated Library System infrastructure with a cloud-based library services platform. The new platform will allow for better systems integration, collaborative functionality, and community features to keep pace with the data demands of a digital ecosystem and enable better distribution to libraries worldwide. Stay tuned for a new and improved Catalog!

A Common Data Language

As a standards organization, NLM designs and integrates products to make information Findable, Accessible, Interoperable, and Reusable (FAIR). Following the FAIR data principles, an interconnected ecosystem of biomedical data, tools and software enables faster research conclusions and resulting publication(s).

NLM’s goal is to link different but related digital research objects, such as articles, data sets, visualization tools, and predictive models, to advance discovery within our vast collection and resources beyond NLM. For example, in response to the global COVID-19 pandemic, we quickly processed provisional out-of-cycle codes and terms from terminology sources in UMLS, RxNorm, SNOMED CT, and VSAC, added new MeSH and supplemental concept records, and new COVID-19-related Common Data Elements (CDEs) in the NIH CDE Repository. NLM also convened a trans-NIH team to identify NIH-endorsed data elements. We are extremely proud of the role we played in accelerating the interoperability and discoverability of critical COVID-19-related information to help solve a global health crisis.

Looking ahead to January 2023, NIH will adopt a new NIH Policy for Data Management and Sharing, requiring NIH-funded researchers to prospectively submit a plan outlining how scientific data from their research will be managed and shared. In response, NLM developed the Dataset Metadata Model (DATMM), designed to describe biomedical research datasets to drive discoverability and re-use of shared research data.

Serving Society

NLM connects globally to a large and diverse mix of stakeholders both in public and private sectors. Our products and services—no matter how agile, digital, or interconnected—would be nothing without our valued users.

We intentionally aggregate diverse data and analytical tools into our collections to advance research on factors such as biological, genomic, social, behavioral, and environmental impacts on health, and characteristics such as sex, gender, age, race and ethnicity. Working with other standards development groups, we are actively involved in efforts to represent sex, gender, race, and social determinants of health in their resources. We develop reliable health information in visual ways that are accessible to broad audiences, including users with low literacy. For example, MedlinePlus offers a series of brief videos (in English and Spanish) covering several popular health topics, and maintains a Health Information in Multiple Languages Collection featuring more than 60 languages to support the information needs of a global audience.

In its 2021-26 funding cycle, the NLM-supported Network of the National Library of Medicine has a new goal to “advance health equity through information”, and will focus on serving underrepresented populations. NLM remains committed to addressing the challenge of health disparities and seeks new ways to provide understandable and trusted health information resources in a variety of ways to support a broad spectrum of users.

I hope this peek inside of NLM gives you a sense of the ways that our dedicated staff are striving to meet the digital demands of the 21st century. Using our strategic plan as a roadmap, we continue to evaluate and develop products with our diverse user base in mind, and recognize that sometimes we need to rethink, rebuild, and reduce our presentation structures.

We’d love to hear how you are reimagining your services. Until next time, may your garden of health and knowledge blossom this spring!

Dianne Babski is responsible for the overall management of one of NLM’s largest divisions, Library Operations, with more than 450 staff providing health information services to a global audience of health care professionals, researchers, administrators, students, historians, patients, and the public. She oversees budget, facilities, administration, and operations, including of a national network of more than 8,000 academic health science libraries, hospital and public libraries, and community organizations to improve access to health information.