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!

Who Really Are Our Users, and How Can We Help Them?

Well, this is a question too big for even the largest biomedical library in the world to answer. Our users are everywhere, and in fact, the same user may approach us with very different needs or personas, such as the brilliant cell biologist who is also the mother of a sick toddler. Today, I am thinking of that huge army of applied clinical informatics specialists and how we might begin to help them.

Applied clinical informatics specialists form the technical workforce that make health information technologies work for patients and clinicians. These individuals often have a background in nursing, medicine, or another clinical specialization. Their advanced training and advanced certifications can attest to their understanding of how health care is delivered, the data and information resources needed to deliver that health care, the data underlying care, and the person-professional-technology engagement needed to better deliver care through effective use of information technology.

NLM is pretty clear about its role in supporting the enormous research and development efforts that design, deploy, and evaluate computer systems for health care and in making the basic and clinical biological and biomedical literature accessible to patients, clinicians, and researchers. To the best of my knowledge, NLM has not done enough to think about the applied clinical informatics community as a distinct stakeholder group, and it is now time to do so!

Applied clinical informatics professionals are skilled at designing, installing, and implementing electronic health records. Some of them specialize in evidence-based practice, bringing the research evidence into the point of care. Others focus on human computer interaction, striving to harness the power of computing to support practitioners and to avoid cumbersome or ill-designed clinical records systems. Still other applied clinical informatics professionals are crafting the decision-support tools that bring effective, ethical artificial intelligence into practice. Some serve key roles in their institutions’ value-based health care deliberations, bringing to light through data where health care interventions bring value to the patient and the system. And some applied clinical informatics specialists focus on translating science into care. These positions are critical to making sure that the advantages of information technology reach into the realm of clinical practice… and man oh man, are they busy!

This makes it hard for applied clinical informatics specialists to make use of NLM’s vast resources in the ways different from the typical researcher uses of these resources – as part of a larger process of building or evaluating research ideas, in a reflective manner, through exploration of several articles on the same theme, and with the time, the patience, and the purpose to discern lines of reasoning out of multiple articles. To best support the applied clinical informatics community, NLM needs to expand its ways of doing business, and find ways to make in-the-moment search for best practices or clinical guidance available. How can we do this?

Rethink the “typical library user” and be open to the atypical user. NLM also serves as the repository of record for biomedical knowledge. We have presumed that the synthesis and application of that knowledge is the responsibility of the reader. Perhaps now is time for us to find new ways to partner with outside organizations that can cast their special eye over our resources and to cull their knowledge for the applied clinical informatics specialist.

Work on translating our research findings into practical practices. NLM makes a substantial investment in developing new algorithms that find better ways to link clinical records together. We have a small but fledgling program, our tech transfer funding to stimulate new businesses relevant to the use of data in health care. Perhaps we should better advertise the availability of these funds and target the challenges experienced by applied clinical informatics practitioners.

Expand our abilities to cull basic science and clinical care innovations from the literature. Applied clinical informatics professionals have, as part of their job, the building of the information tools to bring science into practice. We need to learn from them so we can better expose our literature for their needs, keeping them abreast of new and emerging findings in the literature that will someday make their trajectory into practice.

Partner with specialty organizations to make sure that the important lifelong skill development of being an applied clinical informatics professional becomes a realistic process in their career trajectory.

A few months ago, I spent a morning speaking with applied clinical informatics professionals to affirm their interest in NLM supporting them in their work and to listen to their needs, dreams, and demands. In a future blog, I will tell you more about what I learned from them!

From Our Community to Yours, Happy Healthful Halloween!

Guest post by Jeffrey S. Reznick, PhD, Chief of the History of Medicine Division (HMD) at the National Library of Medicine (NLM).

I have always associated Halloween with community and health.

My family and I appreciate the holiday for the way it brings together our neighborhood of individuals and families with diverse backgrounds, creativity, and interests, all celebrating the occasion safely and meaningfully. Some of our neighbors don’t observe the holiday, and we certainly respect their choice by interacting with them in other ways that bring us together as neighbors. But for me, Halloween is very much about community, family, and friends, and the benefits of gathering supportively.

When I was growing up in Rochester, New York, I participated in the trick-or-treat program for the United Nations Children’s Fund, learning how the coins I collected from my neighbors could help vulnerable children. After I arrived home, I tallied the money before placing it in a special mailing envelope. I also sorted my candy while my parents simultaneously—and paradoxically—reminded me not to eat too much and asked me to set aside some for them to enjoy.

In the weeks following Halloween, certain pieces of my saved candy would disappear; my memory of this fact is tied to understanding now that whoever helped themselves was still enjoying the holiday well into Thanksgiving. Candy is still a big part of Halloween, but now parents have better access to information about candy labels and food safety tips to consider before they and their children indulge. It should come as no surprise that I now simultaneously—and paradoxically—remind my daughters not to eat too much and ask them to save pieces of candy for me to enjoy, right up to and sometimes even beyond Thanksgiving.

Every Halloween, I also looked forward to the annual television broadcast of It’s the Great Pumpkin, Charlie Brown, based on the Peanuts comics by Charles M. Schulz. With its humor, interesting cast of young characters, melodious music, and vibrant colors, the whole special gave meaning to the day. It also made me think about parts of the story involving Snoopy dressing himself in a World War I flying ace costume and imagining scenes behind the Western Front. Something bigger was going on here. That something—Schulz channeling his experiences as a combat soldier as well as his pride as a World War II veteran—partly inspired my interest to study and publish on wartime humanitarianism and experiences of soldiers wounded in World War I.  

I’ll confess that I still enjoy It’s the Great Pumpkin, Charlie Brown. I watch it every year with my younger daughter who has come to enjoy it also. It makes the holiday special for both of us. I hope our time together today around the program will be transcendent and inform her future memories of the holiday, indeed time well spent laughing, appreciating the humor, wondering about Snoopy’s interest in dressing up like a World War I flying ace, and how precisely he sat comfortably atop his doghouse-turned-Sopwith Camel airplane.

Like Snoopy and the gang, and as my talented NLM colleagues have shared through their expertise of our collections, many people enjoy occasions like Halloween when they can don creative costumes and masks, think about the lore around black cats and skeletons, and regale each other with stories of ghosts and other frightful subjects. The timeless vulnerability and mystery of the human body form the basis for many of these observations and stories. Apropos, therefore, is the NLM’s newly redesigned online exhibition Dream Anatomy, which draws on collections of our library, along with work of 20th- and 21st-century artists, to explore how what lies beneath our skin has scared, amazed, entertained, fascinated, and inspired us.  Ultimately, Dream Anatomy demonstrates how art and the artistic imagination have always been an essential part of the science of anatomy and the fun of Halloween.

I join with my NLM colleagues to wish you and your family a truly healthful Halloween, one complete with experiences of togetherness in your community, treasured memories of past holidays and the creation of new memories to treasure in the future, and inspired learning through NLM’s globally appreciated collections, trusted health information resources, and the exciting and updated Dream Anatomy online exhibition.

Dr. Reznick leads all aspects of HMD and has over two decades of leadership experience in federal, nonprofit, and academic spaces. As a cultural historian, he also maintains a diverse, interdisciplinary, and highly collaborative historical research portfolio supported by the library and based on its diverse collections and associated programs. Dr. Reznick is the author of three books and numerous book chapters and journal articles, including as co-author with Ken Koyle of History matters: in the past, present & future of the NLM, published in 2021 by the Journal of the Medical Library Association

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