Anticipating a Future We Never Anticipated

During the summer of 2017, my first summer as Director of the National Library of Medicine, Joyce Backus—our then-NLM Associate Director for Library Operations (ADLO)—approached me with a wild idea: “How about we engage an architectural firm to guide renovations of our library space?” Joyce was a forward-thinking ADLO and had already done much to spearhead important renovations to protect our collections and make them accessible to the public.

As you may know, NLM has 66 miles of shelving that house our expansive collections: from books to journals, audiovisual recordings to unique papers of medical and public health pioneers, to rare and unique manuscripts and volumes spanning ten centuries and originating from nearly every part of the world. From 2014 to 2019, NLM worked with the Wellcome Trust to digitize and make freely available via PubMed Central, or PMC, thousands of complete back issues of historically significant biomedical journals along with their human- and computer-readable citations; the availability of this important biomedical literature began the joint investment to advance research, education, and learning.

Fast forward to 2022 when we entered the third year of a global pandemic. Libraries around the world served as essential resources not just by providing up-to-the-minute, trustable access to COVID-19 information, but also by providing innovative and accessible free spaces to work, study, and gather safely. Many businesses and services had to turn on a dime to figure out how to protect their assets and deliver their operations remotely, but NLM was prepared for the challenge and already familiar with strategies that preserve our past and make our holdings available to people who may never set foot in our building.

Now—I would like to claim clairvoyance as an essential skill of the NLM workforce, but of course that would be foolhardy! No one can see into the future, including NLM staff. Almost 200 years of serving the public has engendered in our workforce an ability to serve increasingly diverse stakeholders in the present while keeping an eye to their future needs and anticipating ways to meet them. Libraries are essentially a human enterprise and designing spaces to make the best use of our excellent workforce is critical for our future.

So, it’s not too surprising that as the COVID-19 pandemic overtook the world, NLM in particular and libraries in general stepped up to the task! NLM expanded its terminologies to include new ones representing the emerging vaccines, therapeutics, and diagnostic tools; expanded the resources in our Network of the National Library of Medicine to support outreach and locally congruent information resources about the pandemic; and improved access to digitized versions of our holdings in an on-demand fashion. We planned new workspace arrangements to make the best use of our existing buildings to anticipate their suitability for hoteling, hybrid work engagements, and on-site meetings to bring teams together.

I am inspired by how we anticipated a future we never anticipated, and I spent the year reflecting with my leadership team to discern how this success will provide us with the guidance to anticipate the next future we never anticipated. Please join us in this process to make sure that we have the space and access to reliable biomedical information for your needs!

Do You Play Word Games?

There is an astoundingly popular word game in which the player gets six tries to guess the word of the day, which has been pre-drawn from a list of five-letter words. The only skills one needs are the ability to recognize the alphabet and basic English-language spelling ability. My sisters and I play every day and compare how many tries it takes each of us to come up with the answer. It’s fun, challenging, and easy at the same time, and it gives us a quick way to share time together.

Today’s answer got me thinking (no spoiler alerts here!), what words describe NLM, its mission, and its impact? Let me share a few with you:

HEALTH

Health, that state of optimal well-being for all, is the North Star of all we do here at the National Institutes of Health. NIH’s motto is “Turning Discovery Into Health,” and NLM’s job is to turn information into discovery. The literature collected by NLM provides rich descriptions that help scientists and clinicians understand health and illness, discover new therapies, and relay patients’ experience. In fact, NLM has played an important role in almost every biomedical and clinical discovery of the past 50 years, each of which fosters the world’s understanding of health.

TRUST

The cornerstone of our great national library is the provision of high-quality, trusted resources to the scientific community and general public. We imbue trust in our resources by following important principles of libraries, including collecting widely from literature resources recognized for meeting standards of scientific communication. We provide documentation and publicly available standard practices and policies. Our work is overseen by an NLM Board of Regents as well as by NIH leadership. These checks and balances help us accommodate a body of scientific resources that are congruent with the scientific and clinical knowledge at the time they are collected and reflective of diverse viewpoints and knowledge maturation.

SERVE

NLM serves science and society by collecting, curating, and connecting all types of scientific communication artifacts and making these accessible to the public. Our biomedical literature resources are open to the world, presenting almost 35 million citations, close to 8.5 million machine- and human-readable full-text articles, and over 1,000 consumer-level health information topics. We provide specialized genomic data resources that help scientists discover the origins of life for many species. By linking the genomic data with the literature, NLM can help clinicians make decisions about how to treat complex illnesses that arise from genetic anomalies.

ALIGN

Biologists use laboratory procedures to distill the genetic material out of samples collected from humans, animals, and other types of matter like wastewater and then compare the sampled genetic material to other known records of genetic materials. Using this process, scientists align and compare one set of proteins gleaned from their experiments to others stored in our genomic repositories to detect genetic anomalies or determine if a discovered sequence is actually a new organism or a variant of a known species. Researchers “align” this newly acquired genetic structure with known structures. But we have millions of records of genetic samples, so this process can be time consuming. However, NLM has built the tool to blast through this alignment challenge!

BLAST

The Basic Local Alignment Search Tool (BLAST) is an algorithm and program developed by NLM staff at our National Center for Biotechnology Information that finds regions of similarities between genetic sequences. The program compares nucleotide or protein sequences to reference sequence databases and calculates the statistical significance of any matches. BLAST helps scientists understand functional and evolutionary relationships between sequences, and it can also be used to identify members of gene families.

It actually takes more than a few five-letter words to describe what NLM does and what it means to science and society. Nonetheless, it was quite fun to wordplay NLM!

Giving Thanks Where Thanks is Due

One of the great joys of being the Director of the National Library of Medicine is the many opportunities for me to express gratitude. In the past, I have given thanks to NLM staff who are veterans (2021), for progress during my tenure (2020), and to our amazing NLM staff members (2019). This year, I am pausing to give thanks for the outstanding products and services developed and stewarded by our NLM staff, made available every day of the year to anyone with an internet connection—and even to some without!

First, I am thankful for our information collections in their many forms. The NLM Board of Regents oversees our Collection and Preservation Policy, which guides NLM as it meets its mission to acquire, organize, preserve, and disseminate biomedical knowledge from around the world. Our collection spans ten centuries from the 11th to the 21st, and ranges from the third oldest Arabic medical manuscript in existence to the “Rosetta Stone” of modern science, Marshall Nirenberg’s genetic chart, from genomic sequences essential for current and future research to information for mothers taking care of sick children.

Organizing the collections and making them findable and accessible builds on the knowledge of library and information science. This foundational knowledge means we can tag objects—real or virtual—with codes and terms that help with organization and retrieval. It also means we use our knowledge of library and information science to guide efforts to annotate and curate molecular data, literature citations, and images so they are accessible to the public. So I am grateful not only for the 66 miles of shelving that hold our precious objects, books, and journals here in Bethesda, but for the ever-powerful computer clouds that preserve our high-value research databases and 34 million bibliographic citations in PubMed. Libraries do more than house books; they use sophisticated knowledge to organize materials and make them readily available.

I am thankful for the ways that staff at NLM’s National Center for Biotechnology Information (NCBI) manages the submission, curation, and dissemination of our enormous genomic and molecular databases. From ClinVar (our collection of genomic sequences linked to clinical annotation) to the Sequence Read Archive (the world’s largest scientific data repository), our staff makes sure that depositors can effectively deposit data, scientific curators can conduct quality checks, and web and interface designers allow access to the data. A few years ago, the NCBI team led a cloud migration process to make available data from the entire 15-petabyte SRA resource on two commercial cloud providers. This bold step democratized sequence-based scientific inquiry and harnessed the computational power of cloud platforms, which contributed to industrial innovations and shortened the pathway for scientific discovery from days and months to minutes and hours. I am thankful for the role NLM plays in accelerating scientific advances and leveraging research resources for public health benefit.

NLM offers more than 1,000 easy-to-read health topic articles through our online consumer health information resource known as MedlinePlus. MedlinePlus is available in both English and Spanish, thereby assuring information access to speakers of two of the world’s most common languages. Through MedlinePlus Connect, our technical team also provides direct, tailored access to MedlinePlus resources automatically through electronic health records, patient portals, and other health information technology systems to deliver information from MedlinePlus to patients and providers at the point of care. I am thankful for the efforts of the MedlinePlus teams that bring timely and trusted information to the lives of everyone, everywhere.

I hinted earlier that there are two main pathways to access NLM products and services. Electronic access, supporting both human- and machine-readable forms, is by far the most common pathway to NLM. We also support the Network of the National Library of Medicine (NNLM) and its more than 8,000 members around the country in public, hospital, and academic medical center libraries to bring the power of NLM and its resources to the public. I am grateful for everyone who works as part of NNLM for their ability to bring NLM’s products and services to communities everywhere as well as how the needs and practices of those communities bring awareness of NLM.

As you pause this year in thanksgiving for the many public services that support you in everyday life, please remember to give thanks for NLM’s products and services. We think they are world class, and we are grateful for our ability to serve you.

The Intangible Rewards of Engaging with Research Data

Guest post by Amanda K. Rinehart, MS, MLIS, Life Sciences Librarian and Associate Professor for the Department of Research and Education, University Libraries, at the Ohio State University. Ms. Rinehart will deliver the 2022 Joseph Leiter NLM/Medical Library Association (MLA) Lecture, “Data Communities: Room for Everyone, Roles for Librarians,” on December 6, 2022.

As I reread the OSTP Public Access Memos from 2013 and 2022, I am struck again by the premise behind openly sharing research data:

When federally funded research is available to the public, it can improve lives, provide policymakers with important evidence with which to make critical decisions, accelerate the rates of discovery and translation, and drive more equitable outcomes across every sector of society.

That’s ambitious enough but sharing research data goes a few steps further: It also uses our taxpayer funds more efficiently, increases public trust in the scientific endeavor, and facilitates research collaboration. However, if you haven’t had the opportunity to be a part of it yet, these can remain abstract motivations and may seem daunting. How and why would any librarian engage with sharing research data?

Research data management (RDM) is the organization, storage, preservation, and sharing of data. When a researcher is faced with a new RDM expectation—especially one that is often seen as a burden instead of a boon—it’s a natural fit for them to trust their librarian to help. Librarians are allies in this changing and confusing landscape. Because an inherent aspect of cutting-edge research is that it has never been done before, it often results in data that has never been previously collected or synthesized. As a result, this data doesn’t yet have ideal resources, workflows, or technologies for sharing it.

There is rarely one solution or easy answer. Librarians must ascertain what the researcher needs, whether it be awareness of new requirements, information about their options to meet these requirements, or education about better data management practices. We point to resources like shared curation training, multi-institutional partnerships and international perspectives, or appropriate data repositories. We acknowledge workflow gaps and challenges and summarize those needs across disciplines and institutions. We advocate for better resources, services, and support for managing research data. Because of this complexity, finding the combination of resources that results in appropriate sharing is more akin to building a relationship or becoming part of the research team rather than a transactional interaction.

However, providing assistance that is tailored to the specific needs of the researcher takes time, effort, and knowledge. Because RDM is a burgeoning field heavily dependent on changing technology and policy, staying abreast of current practices is a heavy investment as well. Most librarians, if not all of them, face reduced staffing, longer hours, more responsibilities, and limited pay. Therefore, what would induce a librarian to engage with research data? For myself, I share values with those cited in the OSTP Public Access Memos, so I have found many of my RDM interactions quite rewarding, and I suspect other librarians do as well.

For example, I participated in a meeting comprised of researchers who wished to improve infant and maternal health outcomes for local lower-income communities. In our county, we have a high rate of infant and maternal mortality, with Black infants dying at 2.7 times the rate of White infants. The researchers wanted to use an app, pre-installed on free phones, to make transportation to health care providers low cost or free. But how would they manage sensitive location and appointment data? Who needs access to that data, and when? What regulations apply, and how can we go beyond those requirements to make sure we are ethical? These are difficult questions, but they can lead to heartening discussions and innovative solutions with custom databases, Data Use Agreements, de-anonymization, encryption, and ultimately, data destruction.

This is just one example that touches on topics that I care about: infant and maternal health, social justice and equity in health care, and effective, efficient transportation as part of city infrastructure. But I’m not a health care provider, a sociologist, or a city planner. I’m a librarian, and as such, I can contribute by meeting researchers where they are, determining their most urgent needs, guiding them to resources, identifying gaps in knowledge and services, and advocating on their behalf to have those gaps filled.

I know my work doesn’t solve these large real-world problems or even just the problem of making research data available to those who can most beneficially use it. But any improvement in RDM practice gets us one step closer. I don’t have to solve the world’s problems to help solve the world’s problems. If you care about how data can be used to fulfill the NIH mission to “enhance health, lengthen life, and reduce illness and disability,” then you can see the value in becoming engaged with research data and how librarians can help researchers meet that goal.

Prior to starting her career as a librarian in 2011, Ms. Rinehart spent eleven years as a biologist with the United States Department of Agriculture testing alternative agricultural methods to reduce the human impact on climate change. Ms. Rinehart has a Master of Library and Information Science degree from the School of Information at the University of South Florida and a Master of Science degree in Botany and Plant Pathology from Michigan State University.

The More AMIA Changes, the More It Stays the Same . . .

Right at this very moment, the American Medical Informatics Association (AMIA) 2022 Annual Symposium is underway in Washington, D.C., and we encourage you to visit NLM @ AMIA 2022 for updates on NLM’s products and programs. Now this may sound quite familiar to those of you who have attended AMIA annual symposiums in Washington, D.C., and other major cities over the past 30 years, but this year it is different. And yet, it is the same.

What’s the same? Well, for me and almost 3,000 other attendees, AMIA is our professional home. Through meetings and conversations, journal articles and webinars, and a host of new events and meetings, members build their knowledge about biomedical and health informatics, share that knowledge with colleagues, and advance the health of the public through informatics. We have built friendships, watched babies be born and grow into adults (including my son Conor), and grieved the loss of great leaders in the field. Colleagues have debated the wisdom of electronic health records that may have inadvertently contributed to clinician burnout and expanded the scope of our design and deployment efforts to encompass tools useful to consumers and language reflective of the diversity of society.

AMIA has welcomed young people into informatics and sponsored high school-student participation in national meetings. Special events now include rapid response to public health threats, special interest meetings for women in informatics, and expanded attention to diversity and inclusion. The fall symposium provides an opportunity for formal and informal mentoring, a quick hug with an old friend, and a reunion of those with whom we studied the basics of the field.

And yet, over 30 years, many things have changed! First and foremost, AMIA as an organization has grown, engaged new leadership, and developed new special interest groups. These each change the tenor of the meeting by adding new events to an already rich and attractive suite of offerings and bringing like-minded people together. The ideas shared and the research reported through the annual symposium have morphed throughout the years; now artificial intelligence takes center stage, tempered by thoughts of transparency and equity. A larger number of panels and industry sessions reflect the rapidly changing landscape of informatics. Electronic posters and smartphone apps take the place of what once were paper posters displayed in long corridors of bulletin boards and a three-inch-thick compilation—dare I say phone book size—of all the papers to be presented at the sessions.

And of course, the pandemic changed both everything and nothing. AMIA still hosted an annual symposium and participants still gathered, at least over video chat! Throughout the pandemic, AMIA offered virtual and hybrid conferences—this is the first annual symposium completely in person since 2019 and boy, was I ready for it!

So, rejoice with us—our annual touchstone of gathering for the science of biomedical informatics and the social support of friends and colleagues continued! Please plan to join us in 2023 and see for yourself what it is like!

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