Hispanic Heritage Month: Improving Access to Health Information

Hispanic Heritage Month (September 15 to October 15) celebrates the many contributions to U.S. society of people originating from Spain, Mexico, the Caribbean, and South and Central America.

Today, there are almost 60 million Latinx-identifying or Spanish-speaking people in the United States (about 18% of the total U.S. population). Representing our nation’s largest ethnic or racial minority, the median age of the Hispanic population is 29.5 years, which is younger than the median age of about 38 years for the overall U.S. population. About 50% are female, almost half are married, and, unlike their non-Hispanic counterparts, they tend to live in households with children. The number of U.S.-born Hispanics is growing faster than the number of Hispanic immigrants.

The Centers for Disease Control and Prevention reports that people of all races who identify as Hispanic are more likely to develop chronic conditions such as cardiovascular disease, type 2 diabetes, and obesity. Each of these conditions can be managed, or even delayed or prevented, by engaging in healthy lifestyle behaviors that include physical activity, healthy eating, and regular check-ups.

So, the health and the health information needs of Hispanics in the United States, and the well-documented disparities that exist between the Hispanic population and other populations, is of critical importance to NLM.

Our powerful consumer health information resource, MedlinePlus, and our Spanish-language version, MedlinePlus en Español, are trusted sources of accurate health information, and we strive to make them culturally sensitive, relevant, and accessible. Our amazing PubMed literature citation database promotes access to research literature in both English and Spanish, and our molecular resources allow for exploring the intersection of genetics and nationalistic identity.

In addition to these online resources, NLM supports Hispanic individuals, families, and groups through our National Network of Libraries of Medicine (NNLM). Serving diverse communities, the NNLM provides another pathway for providing linguistically and culturally relevant health information.  

The NNLM is a powerful human network of over 7,000 academic health science libraries, hospital and public libraries, and community organizations that provide a point of presence in almost every county in the United States. Its eight Regional Medical Libraries (RMLs) make sure that up-to-date information about NLM’s resources are accessible to communities that are often underrepresented in biomedical research. Although all the RMLs provide access to information in English and Spanish, I’d like to highlight the efforts of two of our regions: the South Central Region, serving Arkansas, Louisiana, New Mexico, Oklahoma, and Texas, and the Pacific Southwest Region, serving Arizona, California, Hawaii, Nevada, and the U.S. Territories in the Pacific. Together, these two regions serve 28 million Hispanics — reaching almost half of the Spanish-speaking population in the United States.

The South Central Region supports the Spanish-speaking community specifically through many programs, including outreach to Presbyterian Española Hospital in Española, New Mexico, a special award to the University of North Texas Health Science Center to support a Library School student from a minority community, and emergency funding for Mobile Programming/Pop-up Program Resources & Tools to support disaster relief and response. The Pacific Southwest Region offers programs that engage community health workers/promotores through activities that address social determinants of health as an approach to health education and promotion in the Hispanic community.

But service to the Spanish-speaking public is not limited to the South Central and Pacific Southwest regions. The Middle Atlantic Region offers Spanish language health information resources on topics ranging from AIDS to cancer to diabetes. An interesting program from the Pacific Northwest Region is a grant to bring health information and access to MedlinePlus en Español over the airways from local public libraries to the region.

Because NNLM members are embedded in their communities, they can utilize NLM resources to meet the particular needs of that community. The professional librarians in these communities provide a feedback loop that helps NLM appreciate both the professional terminology associated with critical health concerns and the need to map local colloquial language for Medical Subject Headings (MeSH) to index the literature.  

The NNLM not only helps us extend the amazing federal investment from Washington, DC, to local communities, but also helps ensure that federal staff in Washington understand, in the vernacular, the health concerns of this important population.

During Hispanic Heritage Month — and throughout the year — it’s important to think about how NLM can better engage with the populations we serve. I welcome your suggestions to ensure that our vast and trustable resources serve everyone, everywhere.

Information Along the Underground Railroad

A couple years ago, I wrote about how the paintings in Jacob Lawrence’s Migration Series inspired me to think about how the National Library of Medicine gets information to people on the move—people displaced by violence, natural disasters, or economic crises. I felt a similar stirring after viewing the Jeanine Michna-Bales exhibition Photographs of the Underground Railroad at the Phillips Collection last month.

The deep indigo and shadowy black of Michna-Bales’ photographs stand in stark contrast to the oranges, greens, and yellows of Lawrence’s paintings, which occupy a room across the hall at the Phillips, but both have things to tell me.

Michna-Bales’ collection of nighttime photographs immediately pulled me in, helping me sense a whisper of the fear and anxiety escaping slaves might have felt as they slogged their way north toward freedom. The dark, shadowed images required me to peer in closely to detect a house or barn that might have provided a safe place to hide—or concealed danger. The Drinking Gourd constellation, isolated in the night sky, guided the travelers north along dirt roads and winding rivers, while cypress swamps, mangroves, and thick vegetation, barely perceptible in the moonlight, slowed passage.

It’s a chilling piece of history brought to life through the photographer’s lens, but as the exhibition curator underscored, slavery still exists today. More than 20 million people are enslaved around the world.  More than 50% are women; 25% are children under the age of 18. These staggering figures cry out for redress.

What can NLM do to help those working to combat this crisis or treat its victims?

We provide information to those on the front lines.

The Library’s literature can help primary care physicians and emergency room staff identify patients at risk and potentially rescue victims of human trafficking. It can help clinicians deliver health care that is both trauma-informed and culturally sensitive, attuned to victims’ needs and backgrounds. It can give educators ways to train health professionals to recognize and help victims, offer policy makers strategies to reduce human trafficking, and encourage the global health community to investigate the social and economic elements that drive such exploitation. The Library also has articles on human trafficking for the horrific purpose of organ removal and others on the relationship between human trafficking and stress-related illnesses and drug use among survivors.

It’s a harrowing collection but a necessary one, if we are to combat this crisis.

To further help those who are fighting this fight, PubMed lists articles similar to the ones initially found, helping to shape a coherent picture of the clinical challenges, health services, and public policies that can counteract this crime or mitigate its effects. We also provide the free full text of publicly funded research on this topic.

We may be able to do even more in the future. I see opportunities to tailor the health information we provide to the personal culture, worries, and recent experiences of the person searching. It’s a bold vision, but reaching the most vulnerable makes it worth the effort.


If you think someone may be a victim of human trafficking, call or encourage them to call the National Human Trafficking Hotline at (888) 373-7888 for help, resources, and information. You may also text 233733.

Thank a Medical Librarian

Celebrating National Medical Librarians Month

“Get the word out. Tell the world what we do!”

I received that earnest and heartfelt request from those attending the Medical Library Association’s Midwest Regional Conference in Cleveland earlier this month. And though I thanked the conference attendees for all they do for NLM—helping us connect with our constituents in hospitals, academic institutions, and communities across middle America—I realized there was more I could do to thank and acknowledge all medical librarians, starting with this blog.

I believe that quality information is essential for improved health. It improves clinical decision making and patient care, boosts the quality of biomedical research, supports patients, families, and caregivers, and reduces health care costs.

And who is responsible for organizing and delivering that essential information?

Medical librarians and their partners in the health information profession.

For that, they deserve our thanks, but even more, they should be acknowledged for the myriad ways they improve health care and biomedical research.

Medical librarians…
  • Curate diverse and valuable collections.
    Librarians make deliberate and systematic choices to select the books, journals, data, and other resources needed for research and clinical care.
  • Catalog, index, and make available acquired materials.
    They make the needle you need findable in the collection haystack by adding relevant and appropriate subject headings or keywords to books, journal articles, data sets, images, and other items, which you can then locate by searching freely available databases like PubMed.
  • Manage access rights.
    Medical librarians support copyright and help maintain the intellectual property of authors, publishers, and database creators as they acquire and license resources on behalf of those who need them.
  • Support data discovery.
    Medical librarians identify and create pathways to data repositories that bolster genomic and biomedical informatics research.
  • Find the hard-to-find.
    Librarians know the ins-and-outs of online searching. They’ve trained for it, learning how different databases are organized and how best to extract precise results. Their expertise will save you time and improve outcomes.
  • Help authors publish.
    Librarians can help researchers at every stage of the publishing journey, from writing, revising, and formatting the paper to selecting appropriate and trustworthy outlets for publication.
  • Preserve materials for the future.
    They ensure the collections so painstakingly assembled are safe, secure, and available now and in the years to come, digitizing print materials, monitoring storage conditions, and conserving brittle, crumbling works.

Of course, to thank a medical librarian you have to find one. I suggest starting with NLM’s National Network of Libraries of Medicine (NNLM). At  over 7,000 sites strong, this network provides a point of presence for medical librarianship in almost every county in the US. Many NNLM members are academic institutions, health science libraries, or hospital or clinic libraries, but an increasing number (over 1,700 now) are public libraries taking on new ways to serve their communities.

They’re not alone.

Medical librarians have long ago left the desk behind and stepped into new roles, whether in health care institutions, academic libraries, or private industry. They are leading patient-and-family information services, becoming a part of the knowledge management resources of large health care systems, serving on patient safety and quality control committees, and joining teams of investigators to manage publications, locate critical data sets, gauge research impact, or write grants. From embedded librarian initiatives and innovative outreach programs, medical librarians are deepening the connection with the people they serve, bringing them shoulder-to-shoulder to share knowledge and solve problems.

They’re doing all this because they, too, believe that quality information is essential for improved health, and they know their skills and training put them in the best position to deliver that information.

That’s not only worthy of thanks but of shout-it-from-the-rooftops support. And not just because I say so, but because the data say so.

So, to provide better care, make better decisions, and save money, ask—and then thank—your medical librarian. They’re experts in helping you succeed.

NLM Celebrates Fair Use

Guest post by NLM Associate Fellow Gabrielle Barr and NLM Copyright Group co-chairs Christie Moffatt and Rebecca Goodwin.

It’s Fair Use Week 2018, an annual event coordinated by the Association for Research Libraries (ARL) to celebrate the opportunities of fair use, including the many ways it supports biomedical research and the work we do at here at NLM.

Fair use is a legal doctrine that asserts the right to use materials under copyright in a limited manner without the copyright holder first granting permission. In practice, fair use is a balance between the rights of copyright holders and the rights of researchers, authors, educators, students, artists, and others, as we work as a society to promote science, education, and the arts.

Section 107 of the US Copyright Act provides the details of fair use, but the University of Virginia Library nicely summed it up in only seven words: “Use fairly. Not too much. Have reasons.”

Infographic: Fair Use Promotes the Creation of New Knowledge
Click image to view full infographic.

Libraries regularly champion fair use because of the way it supports research and education, but also because it enables libraries to fulfill their primary mission of providing and preserving information.

The same holds true here at NLM.

NLM’s fair use policies, based on ARL’s best practices, support access to library resources, encourage teaching and learning, allow preserving at-risk materials and collecting web-based content for future scholarship, and facilitate new modes of computational research and data-mining.

From digitizing content to building institutional repositories to creating physical and digital exhibitions, NLM applies fair use in a variety of ways. We maintain the NLM Digital Collections to provide access to historical books, photographs, videos, manuscripts, and maps. We collect web-based “born digital” content documenting major global health events such as the 2014 Ebola Outbreak. We digitize films for the History of Medicine Division’s (HMD) collection of Medical Movies on the Web, showcase materials in physical and online exhibitions, and promote our collections via blogs such as HMD’s Circulating Now. We incorporate copyrighted content into online courses and tutorials for NLM systems such as MEDLINE®, PubMed®, the Unified Medical Language System®, and the Value Set Authority Center. And we include stubs of proprietary clinical assessment instruments in the NIH Common Data Elements Repository to help researchers standardize clinical data.

Now NLM is considering how fair use can accommodate our evolving needs in the technology-rich and data-driven future.

The Library strongly supports the FAIR Data Principles, which affirm that data and other digital objects representing the products and processes of modern biomedical science are Findable, Accessible, Interoperable, and Reusable (FAIR). And we rely increasingly on algorithms, APIs, computer software, searchable databases, and search engines that enable data mining for intellectual purposes.

While fair use can ensure access to and use of these tools and data, recent federal court decisions indicate the intersection of copyright law with APIs and computer software remain part of the fair use frontier. Each new ruling has the potential to redefine current practice and requirements.

In this time of shifting sand, it’s no surprise that ARL’s forthcoming Code of Best Practices in Fair Use for Software Preservation (expected this fall) involves extensive research and interviews with software preservation experts and other stakeholders. Their ability to articulate the complex issues related to software and fair use could significantly impact libraries’ future work preserving today’s digital record.

In the meantime, NLM is forging ahead, applying fair use to advance medical education, biomedical research and discovery, and data-powered health.

We’d love to hear from other institutions on how you employ fair use and the steps you take to balance the rights of copyright holders with those of researchers, educators, and artists. Comment below or drop a note to the NLM Copyright Group.


casual headshot of Gabrielle Barr

Gabrielle Barr, MSI, is an NLM Associate Fellow. Before coming to NLM, she worked in the special collections of Norfolk Public Library and as a project assistant for the Health Sciences Library at the University of North Carolina at Chapel Hill. She received her master of science in information and a certificate in science, technology, and society from the University of Michigan in 2015.

 

casual headshot of Christie Moffatt

Christie Moffatt, MLS, serves as co-chair of the NLM Copyright Group, manager of the Digital Manuscripts Program in the History of Medicine Division, and chair of the NLM Web Collecting and Archiving Working Group. She earned her master’s degree in library science at the University of North Carolina at Chapel Hill, with a concentration in archives and manuscripts.

 

headshot of Rebecca Goodwin

Rebecca Goodwin, JD, serves as co-chair of the NLM Copyright Group and as a data science specialist in the Office of Health Information Programs Development. Previously, she served as special assistant to the director of the Lister Hill National Center for Biomedical Communications. She came to NIH in 2007 as a Presidential Management Fellow after earning her JD from the University of Florida Levin College of Law.

Matters of the Heart

The Library’s role in heart health and understanding

February is American Heart Month. Begun in 1964 by presidential proclamation, this annual event focuses the nation’s attention on the importance of heart health.

That focus is well-placed.

According to the CDC, heart disease remains the leading cause of death for both men and women, with about one in four deaths in the United States attributed to its many forms.

With numbers like that, it’s no wonder NLM takes an active role in advancing knowledge about the preservation, diagnosis, and treatment of heart disease and cardiovascular problems. Of course, we’re not doing heart surgery, but in ways great and small—whether through our research, our products, our collection, our funding, or our writing—we help people learn about the heart, how to treat it, and how to keep it healthy.

That knowledge, as with everything we do, is grounded in science and research, so let’s start there.

PubMed, our flagship database of peer-reviewed biomedical literature, delivers the latest findings on heart disease and its prevention.

Clinicaltrials.gov helps people interested in participating in research on heart diseases find a study. And that’s true regardless of how old you are. Over 15% of the nearly 2,900 active, recruiting clinical trials focused on heart disease are open to children.

NLM’s computational science contributed to CRISPR-cas, a revolutionary tool for editing DNA that researchers in Oregon used last year to fix a heart-damaging genetic defect in human embryos, and our medical illustrators have helped NIH’s Human BioMolecular Atlas Program (HuBMAP) create a 3-D visualization of cardiac tissue.

NLM takes an active role in advancing knowledge about the preservation, diagnosis, and treatment of heart disease and cardiovascular problems.

Elsewhere, our research funding supports others as they look to better understand and treat heart disease through data mining, machine learning, and bioinformatics. All across the country, NLM dollars help drive the science forward, funding Dr. Karina Davidson’s work at Columbia that will accelerate the design of personalized solutions to cardiovascular issues; supporting UCLA’s Corey Arnold, PhD, who is trying to help physicians manage heart disease by establishing an automated system to summarize patient records; and financing Dr. James Blum’s group at the University of North Carolina-Wilmington as they try to predict which patients are at risk for developing post-operative complications like atrial fibrillation. Together they—and other NLM grantees—are doing innovative work that is expected to make a difference in preventing, diagnosing, or treating heart disease.

NLM staff then leverage the findings of our grantees and other researchers to deliver the most current guidance to patients, families, and caregivers through MedlinePlusNIH MedlinePlus magazine, and HealthReach. Together, these consumer-oriented resources—available in English, Spanish, and sometimes in other languages—provide practical information to help lay people understand heart disease, learn about risks, diagnosis, and treatment, and find experts to guide them.

But our cardiac contributions don’t end there.

We also collect materials and share insights regarding how medicine’s understanding of the heart and the circulatory system, along with our treatment of heart disease, evolved over time.

Our History of Medicine Division‘s blog, Circulating Now, recently explored William Harvey’s ground-breaking anatomical discoveries published in his 1628 work Exercitatio anatomica de motu cordis et sanguinis in animalibus. Harvey, the personal physician to England’s King Charles I, presented experimental proof of blood’s circulation through the body, elucidating the complex and beautiful interplay between arteries, veins, lungs, and the heart.

And on a more contemporary note, NLM’s Profiles in Science collection shares the papers of notable physicians whose work has transformed the treatment of heart disease, including legendary heart surgeons Michael E. DeBakeyAdrian Kantrowitz, and Henry Swan.

These examples—which range from the 17th century to today—highlight just some of the ways NLM celebrates American Heart Month and encourages good hearth health throughout the year.

You can do your part, too. Take the #MoveWithHeart pledge and get moving. It all adds up to a healthy heart!