Reflect, Reimagine, Reenergize TOGETHER

Guest post by Patricia Flatley Brennan, Director, NLM; Dianne Babski, Associate Director for Library Operations, NLM; and Amanda J. Wilson, Chief of the Office of Engagement and Training, NLM.

Welcome to NLM @ MLA ’21 vConference! This year, for the Medical Library Association (MLA) virtual meeting, we organized NLM’s activities around three themes:

  1. Reflect on the impact of the past year,
  2. Reimagine our work to make what we do better, and
  3. Reenergize by reconnecting with NLM colleagues and embracing the new normal! 

This year offered many opportunities to pause and reflect. We were struck by the emergence of the COVID-19 pandemic, the global response of lockdowns, personal adoption of public health measures, and more than 1.7 billion vaccine doses already administered worldwide. Our reflections led us to a reaffirmation of the importance of medical libraries as a source of trusted health information and the critical need for work-life balance in everyone’s lives. Like others around the world, we looked on in horror and dismay at repeated episodes of violence and injustice inflicted upon communities of color. We hope that our partners around the country will join the momentum surrounding the NIH UNITE initiative to end structural racism and racial inequalities in the health research enterprise.

The maximum telework posture of NLM and many other industries prompted reimagining our work life now and in the future. We structured many of our NLM @ MLA ’21 presentations to share our experiences of working at a distance, video conferencing, and providing library services during a time when the physical doors of libraries are closed.

We hope that the opportunity to gather in spirit, rather than in person, brings the reenergizing atmosphere that often comes with greeting old friends and meeting new colleagues. We hope you’ll take advantage of the opportunities to gather around professional conversations and social engagement.

NLM at the Medical Library Association 2021 vConference

NLM’s participation at the MLA ’21 vConference began on May 17th and will continue through May 27th. One of the advantages of a virtual symposium is that you’re not restricted to viewing a session once – all NLM sessions will be available online after May 27th.

NLM began this year’s conference with a full day symposium introducing the 2021-2026 Network of the National Library of Medicine (NNLM). The day started with a celebration of NNLM accomplishments to date, particularly over the last 5 years. This session attracted more than 250 attendees who reflected on where NLM has been. For example, do you know the highest number of regions that the NNLM ever had? Was it 9, 11, or 50? Or, how much outreach funding NNLM awarded to communities in the last year? Over or under $1 million? This session also provided an overview of how the Network has been reimagined for the 2021-2026 cooperative agreement, and is being reenergized though exciting and innovative programming and projects. Find these answers and what else is in store for the Network on the NNLM @ MLA day page!

During last week’s dedicated exhibit time, we hosted 33 one-hour Meet the Experts sessions, involving over 50 speakers covering a wide range of topics including data science practice, PubMed and PubMed Central, tools for scholarly publishing, the 2020-2021 Associate Fellows cohort and projects, intramural training at NLM, consumer health resources, health data standards, and many more – whew! The “NNLM Reading Club: A Vehicle for Starting Health Conversations” took top marks for being the most popular session.

We also provided special highlights of NLM’s response to COVID-19 in the Exhibitor Solution Showcase. NLM’s Dina Demner-Fushman, MD, PhD, Valerie Florance, PhD, Yanli Wang, MD, PhD, Amanda Wilson, MSLS, and Robin Taylor, MLIS, presented on topics such as TREC-COVID, a competition applying national language processing to resolve challenges related to COVID-19; the Rapid Acceleration of Diagnostics projects designed to speed COVID-19 testing, and to identify new ways of detecting COVID-19 in people and in the environment (think of an electronic nose or waste water sampling); the Post-Acute Sequelae of SARS-CoV-2 Infection Initiative, now known as ReCOVer; and how common data elements are making the data acquired through COVID-19 studies harmonized and available for researchers in the future. 

Teresa Zayas Cabán, PhD, NLM’s Assistant Director for Policy Development, presented updates and priorities from NLM and NIH at the Legislative Update session, and, not-for-profit Stop Foodborne Illness executive, Mitzi D. Baum, MS, delivered remarks on the topic of public health and food safety as the keynote speaker for this year’s Joseph Leiter NLM/MLA Lectureship. You can take a deep dive into the NLM@MLA’21 website where you can find links to the 2021 Leiter Lecture recording; NLM and NNLM On-Demand Presentations, Lightning Talks; Immersion Sessions; biographies for NLM and NNLM staff participating in the Meet the Experts sessions; and more!

As we close out our participation in the MLA ’21 vConference, our last don’t miss events are:

  • Take a Break with Dr. Patricia Flatley Brennan on May 26 at 6 pm (CT). Join Dr. Brennan for a signature trivia evening break. Join Us!
  • The ever-popular, annual NLM Update, May 27 at 10:15 am (CT), this year featuring NLM Director Patricia Flatley Brennan, RN, PhD; Associate Director for Library Operations Dianne Babski; and Acting Director, Lister Hill National Center for Biomedical Communications, Olivier Bodenreider, MD, PhD.

Reflect. Reimagine. Reenergize.

As we reflect on our experience at the MLA ’21 vConference, our interactions with colleagues has provided even more insight to reimagine our work to make what we do better, and reenergize as we embrace the new normal!

Which element of this year’s theme do you relate to most? Why?

(left to right)
Dianne Babski, Associate Director for Library Operations at NLM
Patricia Flatley Brennan, RN, PhD, NLM Director
Amanda J. Wilson, Chief, Office of Engagement and Training at NLM

What Health Literacy Outreach Looks Like at NLM

Guest post by M. Nichelle Midón, Project Scientist, Office of Engagement and Training, National Library of Medicine.

Earlier this year, NLM Director Dr. Patricia Flatley Brennan shared insights about how we, at NLM, support individual and organizational health literacy. As the world’s largest biomedical library, NLM provides physical and digital access to trusted, quality health information with the ability to reach people where they live, work and play.

One way we do this is through our Network of the National Library of Medicine (NNLM), which leverages more than 8,000 academic health science libraries, hospital and public libraries, and community organizations across the United States to promote health literacy and ensure that NLM resources are accessible to the public. NNLM develops and offers programs that affect communities in meaningful ways.  

One of NNLM’s recent success stories is Project TORDS (Technology Outreach to Reduce Health Disparities and Stigma). Tony Nguyen, MLIS, AHIP, executive director of the NNLM Southeastern Atlantic Region, recently described the program, saying “Project TORDS is designed to increase access to technology in rural and underserved communities in southern West Virginia by providing training on the use of technology while showing participants how to access, evaluate and use online health information, such as NLM’s MedlinePlus.”

According to Darryl Cannady, the executive director of South Central Educational Development, Inc., a local, community-based organization participating in Project TORDS, “Living in rural, poverty stricken Southern West Virginia, where residents live with many health disparities and social determinants of health, we have to create innovative ways to reach the most disenfranchised communities and provide the needed access to health education and access to quality health care. Project TORDS helps bridge gaps and connect the dots to health education and resources, while simultaneously reducing stigma through education.”

Watch all about it: Project TORDS

Click to learn more about the impact of Project TORDS.

Other NNLM health literacy outreach programs include the Wash and Learn and Promotores de Salud programs.

The Wash and Learn program transforms local laundromats into informal learning spaces where people can access early-learning literacy materials as they wait for their clothes to wash and dry.

NLM’s outreach to Promotores de Salud, the Spanish term for “community health workers,” reaches vulnerable and underserved members of the Latino/Hispanic community with health information and resources.  These outreach efforts include sessions that promote awareness of culturally appropriate health information from NLM.

Watch all about it: Wash and Learn

Click to watch how NNLM supports improving health literacy at a local laundromat.

Watch all about it: Promotores de Salud

Click to watch Promotores de Salud in action.

Join us in celebrating Health Literacy Month this October – what does health literacy month mean to you?

M. Nichelle Midón works with NLM’s National Network of Libraries of Medicine (NNLM) to provide researchers, health professionals, public health workforce, educators, and the public with equal access to biomedical and health information resources. She holds a Bachelor of Science in public health from the University of North Carolina at Chapel Hill, a Master of Science in library and information science from the Catholic University of America, and a Master of Science in instructional technology from Towson University.

The Wonder of Everyday Things

As I write this, the National Institutes of Health campus is blanketed with a light dusting of snow. The roads and paths are clear, but the grass is covered everywhere. As I walked past the day care building, I spied a dad watching his toddler girl crunch through the snow-covered grass. She slid one way and stomped another, in all ways just delighting in it. Her whole face, especially her eyes, conveyed joy and amazement. Watching her was so enjoyable that I had a hard time moving on, toward Building 38 and the work that awaited me.

This little scene reminded me of a sentiment that’s been shared with me by many NLM patrons and stakeholders around the world: A library is a place to experience the wonder of everyday things.

Indeed, a library provides a window to the wonders of the world, from scientific discoveries to historical artifacts to new ideas about the universe. But it’s also a repository, of sorts, of many everyday things. People approach a library with questions big and small, and they leave with greater understanding and new ideas. Perhaps a library can be described as a platform to experience wonder.

For many people, the idea of a library is filled with the experiences of youth. Maybe you were taken to the library by a parent, teacher, or sibling. Or maybe you visited a bookmobile, like I did, that traveled around bringing all sorts of books to your community. Did you, like Maria, a woman I worked with once in homeless shelter, bring your family to the downtown library each Saturday, so your children had a warm, safe place to read and explore? Perhaps you were brought to the NLM reading room when your mother perused our holdings in the course of her studies. Did your school have a library, or learning resource center, for further exploration outside the classroom? Did you feel like a grown-up when your youth library card was replaced with a regular one, giving you access to everything in the “adult room”?

I hope you still experience some of that childhood excitement when you approach and use the resources of the National Library of Medicine. While only a few people physically enter our library building now, every day over 3 million people connect with us online — to find articles, review what’s new in their field, explore the relationship between genes, find potential targets for new cancer chemotherapies, and so much more.

As a 21st-century library, NLM faces the challenge of how to create the special environment of the physical libraries that many of us experienced when we were young. To me, it truly is a bit less satisfying to tap on a keyboard than to walk through the stacks and pull down a book with an interesting title. We’ve yet to create the electronic equivalent of the hum of library patrons talking to each other or the reference librarian. And we haven’t captured that unique smell of old books and periodicals, which strengthened our sense of connection with the people who had opened and read those same pages before us.

The world has become more complicated, and the need for libraries and their services has only continued to grow.

To serve our users’ changing needs, NLM is constantly looking for new ways to construct searches or present results or display images of our holdings. And while the practical concerns surrounding the transmission of knowledge seem to be our focus, I’m always thinking about how we can deliver that knowledge in a way that sparks wonder in everyday things. Please share how we can do this for you!

Socio-legal Barriers to Data Reuse

Envisioning a sustainable data trust

Guest post by Melissa Haendel, PhD, a leader of and advocate for open science initiatives.

The increasing volume and variety of biomedical data have created new opportunities to integrate data for novel analytics and discovery. Despite a number of clinical success stories that rely on data integration (e.g., rare disease diagnostics, cancer therapeutic discovery, drug repurposing), within the academic research community, data reuse is not typically promoted. In fact, data reuse is often considered “not innovative” in funding proposals and has even come under attack. (See the now infamous “research parasites” editorial in The New England Journal of Medicine.)

The FAIR data principles—Findable, Accessible, Interoperable, and Reusable—are a terrific set of goals for all of us to strive for in our data sharing, but they detail little about how to realize effective data reuse. If we are to grow innovation from our collective data resources, we must look to pioneers in data harmonization for insight into the specific advantages and challenges of data reuse at scale. Current data-licensing practices for most public data resources severely hamper data reuse, especially at scale. Integrative platforms such as the Monarch Initiative, the NCATS Biomedical Data Translator, the Gabriella Miller Kids First Data Resource Portal, and myriad other cloud data platforms will be able to accelerate scientific progress more effectively if licensing issues can be resolved. As a member of these various consortia, I want to facilitate the legal use and reuse of increasingly interconnected, derived, and reprocessed data. The community has previously raised this concern in a letter to NIH.

How reusable are most data resources? In our recently published manuscript, we created a rubric for evaluating the reusability of a data resource from the licensing standpoint. We applied this rubric to more than 50 biomedical data and knowledge resources. These assessments and the evaluation platform are openly available at the (Re)usable Data Project (RDP). Each resource was scored on a scale of zero to five stars on the following measures:

  • findability and type of licensing terms
  • scope and completeness of the licensing
  • ability to access the data in a reasonable way
  • restrictions on how the data may be reused, and
  • restrictions on who may reuse the data.

We found that 57% of the resources scored three stars or fewer, indicating that license terms may significantly impede the use, reuse, and redistribution of the data.

Custom licenses constituted the largest single class of licenses found in these data resources. This suggests the resource providers either did not know about standard licenses or believed the standard licenses did not meet their needs. Moreover, while the majority of custom licenses were restrictive, just over two-thirds of the standard licenses were permissive, leading us to wonder whether some needs and intentions are not being met by the existing set of standard permissive licenses. In addition, about 15% of resources had either missing or inconsistent licensing. This ambiguity and lack of clear intent requires clarification and possibly legal counsel.

A total of 61.8% of data resources use nonpermissive licenses.

Putting this all together, a majority of resources would not meet basic criteria for legal frictionless use for downstream data integration and redistribution, despite the fact that most of these resources are publicly funded, which should mean the content is freely available for reuse by the public.

If we in the United States have a hard time understanding how we may reuse data given these legal restrictions, we must consider the rest of the world—which presumably we aim to serve—and how hard it would be for anyone in another country to navigate this legalese. I hope the RDP’s findings will encourage the worldwide community to work together to improve licensing practices to facilitate reusable data resources for all.

Given what I have learned from the RDP and a wealth of experience in dealing with these issues, I recommend the following actions:

  • Funding agencies and publishers should ensure that all publicly funded databases and knowledge bases are evaluated against licensing criteria (whether the RDP’s or something similar).
  • Database providers should use these criteria to evaluate their resources from the perspective of a downstream data user and update their licensing terms, if appropriate.
  • Downstream data re-users should provide clear source attribution and should always confirm it is legal to redistribute the data. It is very often the case that it is legal to use the data but not to redistribute it. In addition, many uses are actually illegal.
  • Database providers should guide users on how to cite the resource as a whole, as individual records, or as portions of the content when mashed up in other contexts (which can include schemas, ontologies, and other non-data products). Where relevant, providers should follow best practices declared by a community, for example the Open Biological Ontologies citation policy, which supports using native object identifiers rather than creating new digital objects.
  • Data re-users should follow best practices in identifier provisioning and reference within the reused data so it is clear to downstream users what the license actually applies to.

To be useful and sustainable, data repositories and curated knowledge bases need to clearly credit their sources and specify the terms of reuse and redistribution.

I believe that, to be useful and sustainable, data repositories and curated knowledge bases need to clearly credit their sources and specify the terms of reuse and redistribution. Unfortunately, these resources are currently and independently making noncompatible choices about how to license their data. The reasons are multifold but often include the requirement for sustainable revenue that is counter to integrative and innovative data science.

Based on the productive discussions my collaborators and I have had with data resource providers, I propose the community work together to develop a “data trust.” In this model, database resource providers could join a collective bargaining organization (perhaps organized as a nonprofit), through which they could make their data available under compatible licensing terms. The aggregate data sources would be free and redistributable for research purposes, but they could also have commercial use terms to support research sustainability. Such a model could leverage value- or use-based revenue to incentivize resource evolution and innovation in support of emerging needs and new technologies, and would be governed by the constituent member organizations.

casual headshot of Melissa Haendel, PhD Melissa Haendel, PhD, leads numerous local, national, and global open science initiatives focused on semantic data integration and disease mechanism discovery and diagnosis, namely, the Monarch Initiative, the Global Alliance for Genomics and Health (GA4GH), the National Center for Data to Health (CD2H), and the NCATS Biomedical Data Translator.

On Becoming

At what point can one say, “I am a librarian”?

No, I’m not asking about myself. Instead, after reading Michelle Obama’s autobiography, Becoming, I’ve been thinking about how our lives, including our careers, unfold, and whether or not we ever truly become what we aspire to be.

So, at what point can one say, “I am a librarian”? Is it on entry to a graduate program in library science? When assuming that first professional position? As one grows in skill and sophistication or achieves some recognition for the unique expertise of the profession?

You might argue for any of these, but from where I sit, a librarian is always becoming. Curiosity and intellectual drive lead to acquiring the academic degree, but opportunities, shifting trends, and emerging technologies stimulate continuing education and life-long learning. As Mrs. Obama observed, “Becoming isn’t about arriving somewhere or achieving a certain aim…[it’s] forward motion, a means of evolving.” (p. 419)

So it is with librarians, I think. With each change, librarians are challenged to continue becoming—in new ways—the professionals responsible for selecting, acquiring, and managing important collections. In this sense, becoming calls for recognizing the opportunities and choices available and reconciling them to one’s life goals. This type of becoming might lead to acquiring new skills, abandoning old patterns, or stepping into unfamiliar territory, whether by moving across the country or into a different role.

The National Library of Medicine wants to be a part of that becoming for medical librarians, public librarians responsible for health information in a community, and academic librarians who support researchers, students, and academic clinicians. Through our National Network of Libraries of Medicine, we provide webinars and training courses to help librarians solve practical problems and prepare for a future of data-powered health, and we partner with the Medical Library Association to offer programs on access, digital rights management, and open science—all trends that promise to nudge libraries in new directions and librarians toward expanding roles.

Along the way this Library is becoming, too. As NLM prepares to enter its third century, we are tackling emerging challenges and moving in new directions. Where once hundreds of people researched here in our reading room in Bethesda, now millions of people access our electronic resources daily.  Hundreds of subject matter experts and computer scientists now complement our outstanding library science workforce. And we’re moving beyond library science and computer science to improve everyone’s facility and fluency with data science, so we can be ready for what’s coming.

So, embrace the becoming. Continue to learn, to grow, to evolve. And let’s do it together.