Glad to Meet You Virtually: Reflections on the MLA Conference

I’ve just “returned” from the Medical Library Association (MLA) ’20 Conference Live Action Week held August 10–14. After much deliberation and rescheduling, this meeting, like so many others, was reimagined in a virtual format using video, text and chats, and online presentations to connect attendees.

Returned is a funny term because, of course, I didn’t travel any farther than from my desk to the table in my home office. But during those several days, I turned my focus away from my usual pursuits while I attended virtual sessions and participated in discussions to improve my understanding of how NLM can align its efforts with MLA to meet the health information needs of society.

MLA is a global organization with a membership of more than 400 institutions and 3,000 professionals in the health information field. NLM and MLA partner to address issues related to health information services and to support joint educational programs. MLA’s annual meeting provides NLM with opportunities to introduce new products and initiatives, get feedback on our services, and learn how to better support the medical library community.

I was delighted to join my NLM colleagues Dianne Babski, acting associate director of NLM’s Division of Library Operations, and Amanda J. Wilson, chief of NLM’s Office of Engagement and Training, to update conference participants on NLM activities and share a new video introducing NLM. We centered our remarks around three themes: relevance, resilience, and reinvention.

NLM strives to be relevant to the evolving health information needs of professionals, researchers, and patients — our mission since NLM was established in 1836. Being relevant means understanding and anticipating information needs in a principled way. This requires a great deal of resilience across our organization as scientific communication advances, research paradigms shift, and the very words we use to characterize health problems and label health outcomes evolve. Remaining engaged, particularly during this time of maximum telework and urgent efforts to respond to the COVID-19 pandemic (in addition to focusing on our usual work), also requires resilience. So NLM is reinventing the way we do our work; the manner in which we engage our stakeholders; and our ability to deliver products and services to partners who are also facing challenges related to social-distancing measures, reduced hours, or the elimination of services due to cost-cutting initiatives.

During our presentation we shared an update on efforts to enhance our approach to reaching communities through the work of the evolved NNLM and its new name – the Network of the National Library of Medicine. This more focused and inclusive name acknowledges that not all members are libraries of medicine. Its new goal? To increase health equity through information – which adds an important new dimension to NNLM’s mission. This effort also involves an increased emphasis on reaching underrepresented populations and balances NNLM regions across communities served.

We encouraged medical librarians to consider how these themes — relevance, resilience, and reinvention — play out in their lives. It’s no secret that traditional opportunities for hospital librarians are disappearing at a time when their expertise is more relevant than ever. This change requires a measure of reinvention to determine how to add data science and data librarianship skills to a medical library training program and work history and identify new ways to serve the public with the original zeal that brought people to medical librarianship. During this time of challenge — and opportunity — medical library professionals are also being called upon to demonstrate the capacity to recover quickly from difficulties and the ability to spring back into shape, that is, to be resilient.

So, what was missing from this year’s conference?

I missed hugs! I missed the serendipitous encounters with far-flung colleagues as we rushed to another session but still found time to exchange greetings. I missed Teresa Knott’s smile and missed seeing former associates and NLM/Association of Academic Health Science Libraries fellows who have become professionals. I missed meeting in person with MLA leadership to continue learning how to become a better partner. And I missed seeing my NLM colleagues, both those who work here in Bethesda and those who work at other locations around the country.

Relevance. Resilience. Reinvention. Each of these is infused and strengthened during interactions with colleagues at national conferences and in our everyday workplaces.

How can NLM help ensure the presence of these qualities in your life during this time of virtual meetings?

Watch All About It!

Guest post by Bart Trawick, PhD, director of the Customer Services Division at the National Library of Medicine’s National Center for Biotechnology Information, National Institutes of Health.

NLM’s PubMed is the most heavily used biomedical literature citation database in the world. PubMed provides free access to more than 30 million citations and is searched by more than 2.5 million users daily. It is a critical resource for helping researchers, health care professionals, students, and the public share information and learn more about the latest developments in life sciences.

Earlier this year, NLM launched an updated version of PubMed with an enhanced design that provides advanced technology to improve the user experience on mobile as well as desktop devices. This modern interface includes updated web elements for easier navigation and enhanced search results, including previews with highlighted text snippets that can help you scan your results.

Instead of telling you more about these new features and how they work, I invite you to check out a few of them in this video.

Click to watch and learn more about a few of PubMed’s exciting features.

Video Transcript (below):

PubMed is the most heavily used biomedical citation database in the world, guiding over two and a half million users per day to the latest advances in life sciences research. We’re constantly improving PubMed to meet the needs of its diverse user base and to take advantage of ever-evolving internet technologies and standards.

The latest version of PubMed, released in May 2020, is the product of hundreds of hours of stakeholder engagement and research undertaken to give you a better experience.

And it’s not the first time we’ve made big changes.

From its humble beginnings in 1997, PubMed now comprises more than 30 million biomedical literature citations from MEDLINE, life science journals, and online books. These citations may include links to full-text content in PubMed Central and publisher websites to take you directly to the information you need.

To be sustainable going forward, the latest release of PubMed required major changes including new databases, web architecture and cloud delivery. Combined, these changes resulted in a much more resilient version of PubMed with a modern design that looks and works great on your desktop, your laptop, and your mobile device!

We realize this feels like a big change, but we’ve been working hard to help everyone make the transition to the new site and have continued to make improvements along the way.

Here are a couple new and revamped features designed to improve the user experience.

The new Cite button makes it easy to retrieve styled citations you can copy and paste into a document or download an .nbib file to use with your reference manager software.

Using the Cite button for an item will open a pop-up window where you can copy the citation formatted in four popular styles.

Automatic Term Mapping, also called “ATM”, was present in the legacy PubMed, but it’s been expanded to include additional British and American spellings, singular and plural word forms, and other synonyms to provide more consistent and comprehensive search retrieval.

We’re always looking for ways to improve PubMed. Just as we’ve done for the past 24 years, we’ll continue to add features and data to stay current as technology, publishing standards, and our users’ needs evolve.

Please think about other ways that NLM can help you, and share your ideas  with us.  

Headshot image of Bart Trawick, PhD

As director of the Customer Services Division, Dr. Trawick works to connect customers with the vast information resources available from NLM’s National Center for Biotechnology Information. He has also worked to support the National Institutes of Health Public Access Policy since its establishment in 2005. Dr. Trawick is a graduate of Texas A&M University and the University of Texas Health Science Center at Houston.

Introducing the NIH Guide Notice Encouraging Researchers to Adopt U.S. Core Data for Interoperability Standard

Recently, NIH issued a guide notice (NOT-OD-20-146) encouraging NIH-supported clinical programs and researchers to adopt and use the standardized set of healthcare data classes, data elements, and associated vocabulary standards in the U.S. Core Data for Interoperability (USCDI) standard. This standard will make it easier to exchange health information for research and clinical care, and is required under the Office of the National Coordinator Health Information Technology (ONC) Cures Act Final Rule to support seamless and secure access, exchange, and use of electronic health information.

USCDI standardizes health data classes and data elements that make sharing health information across the country interoperable, expands on data long required to be supported by certified EHRs, and incorporates health data standards developed.

NLM is proud to support USCDI through continued efforts to establish and maintain clinical terminology standards within the Department of Health and Human Services.

Standardized health data classes and elements enable collaboration, make it easier to aggregate research data, and enhance the discoverability of groundbreaking research. USCDI adoption will allow care delivery and research organizations to use the same coding systems for key data elements that are part of the USCDI data classes.

I encourage you to read more about the new guide notice in a joint post developed in collaboration with my NIH and ONC colleagues titled: “Leveraging Standardized Clinical Data to Advance Discovery.” And I ask you to consider, what could this notice mean for you? 

Some Insights on the Roles and Uses of Generalist Repositories

Guest post by Susan Gregurick, PhD, Associate Director for Data Science and Director, Office of Data Science Strategy, NIH

Data repositories are a useful way for researchers to both share data and make their data more findable, accessible, interoperable, and reusable (that is, aligned with the FAIR Data Principles).

Generalist repositories can house a vast array of data. This kind of repository does not restrict data by type, format, content, or topic. NIH has been exploring the roles and uses of generalist repositories in our data repository landscape through three activities, which I describe below, garnering valuable insights over the last year.

A pilot project with a generalist repository

NIH Figshare archive

Last September, I introduced Musings readers to the one-year Figshare pilot project, which was recently completed. Information about the NIH Figshare instance — and the outcomes of the project — is available on the Office of Data Science Strategy’s website. This project gave us an opportunity to uncover how NIH-funded researchers might utilize a generalist repository’s existing features. It also allowed us to test some specific options, such as a direct link to grant information, expert guidance, and metadata improvements.

There are three key takeaways from the project:

  • Generalist repositories are growing. More researchers are depositing data in, and more publications are linking to, generalist repositories.
  • Researchers need more education and guidance on where to publish data and how to effectively describe datasets using detailed metadata.
  • Better metadata enables greater discoverability. Expert metadata review proved to be one of the most impactful and unique features of the pilot instance, which we determined through two key metrics. When compared to data uploaded to the main Figshare repository by NIH-funded investigators, the NIH Figshare instance had files with more descriptive titles (e.g., twice as long) and metadata descriptions that were more than three times longer.
Illustrating how professionals can identify opportunities for collaboration and competition.

The NIH Figshare instance is now an archive, but the data are still discoverable and reusable. Although this specific pilot has concluded, we encourage NIH-funded researchers to use a generalist repository that meets the White House Office of Science and Technology Policy criteria when a domain-specific or institutional repository is not available.

A community workshop on the role of generalist repositories

In February, the Office of Data Science Strategy hosted the NIH Workshop on the Role of Generalist and Institutional Repositories to Enhance Data Discoverability and Reuse, bringing together representatives of generalist and institutional repositories for a day and a half of rich discussion. The conversations centered around the concept of “coopetition,” the importance of people in the broader data ecosystem, and the importance of code. A full workshop summary is available, and our co-chairs and the workshop’s participating generalist repositories recently published a generalist repository comparison chart as one of the outcomes of this event.

We plan to keep engaging with this community to better enable coopetition among repositories while working collaboratively with repositories to ensure that researchers can share data effectively.

An independent assessment of the generalist repository landscape

We completed an independent assessment to understand the generalist repository landscape, discover where we were in tune with the community, and identify our blind spots. Key findings include the following:

  • There is a clear need for the services that generalist repositories provide.
  • Many researchers currently view generalist repository platforms as a place to deposit their own data, rather than a place to find and reuse other people’s data.
  • Repositories and researchers alike are looking to NIH to define its data sharing requirements, so each group knows what is expected of them.
  • The current lack of recognition and rewards for data sharing helps reinforce the focus on publications as the key metric of scientific output and therefore may be a disincentive to data sharing.

The pilot, workshop, and assessment provided us with a deeper understanding of the repository landscape.

We are committed to advancing progress in this important area of the data ecosystem of which we are all a part. We are currently developing ways to continue fostering coopetition among generalist repositories; strategies for increasing engagement with researchers, institutional repositories, and data librarians; and opportunities to better educate the biomedical research community on the value of effective data management and sharing.

The Office of Data Science Strategy will announce specific next steps in the near future. In the meantime, we invite you to share your ideas with us at datascience@nih.gov.

Dr. Gregurick leads the implementation of the NIH Strategic Plan for Data Science through scientific, technical, and operational collaboration with the institutes, centers, and offices that make up NIH. She has substantial expertise in computational biology, high performance computing, and bioinformatics.

It’s My Birthday: An Ode to Aging and to Lifespan Research

When you grow up in a family of 10 kids, like I did, your birthday is a very special day. My mom and dad made sure that it was always a celebration, with breakfast pancakes, a picnic lunch in the park, and favorite foods for dinner. It’s a day that’s just yours. By now, I’ve had more than 65 birthdays, and I have to say, each one is better than the last! 

Like most people, I find that birthdays are a time for reflection, when you can pause and pinpoint where you are in the arc of your life. As a kid, it was a time of pure pleasure; as an adolescent, I wanted to be further along that arc. In midlife, I think I’m where I’m supposed to be, because I feel like I’m 39, think I look like I’m 49, believe I have a career worthy of someone who’s 59, and am approaching the wisdom of someone who’s 69. And although my reflections — both my thoughts and my likeness in the mirror — have changed over time, they all still reside within me, and every stage of my life informs each moment of my present.  

NIH also recognizes the value of the various life stages and their potential contributions to clinical research. Generating new knowledge for health through biomedical research stands to have the greatest impact if individuals from across the lifespan are included, as appropriate, in a study. 

This idea was deemed so important that NIH released the NIH Policy and Guidelines on the Inclusion of Individuals Across the Lifespan as Participants in Research Involving Human Subjects. In essence, this Inclusion Across the Lifespan policy states that individuals of all ages, including children (i.e., individuals under the age of 18) and older adults, must be included in all human subjects research conducted or supported by NIH unless there are scientific or ethical reasons not to. NIH is also hosting a virtual workshop, NIH Inclusion Across the Lifespan II, in September to review the lessons learned from this policy and examine evidence-based techniques for meeting the needs of this policy in research.

This commitment encourages individuals at all life’s stages and of all ages to participate in clinical research, as appropriate, where innovations and therapeutics are being created, tested, and evaluated. As a result, we’ll learn more about the effectiveness of new medicines on children or why some older adults maintain robust physical function well into their 90s, and participants will benefit from being involved in leading-edge research.

Along with requiring the inclusion of participants from across the lifespan in research studies, NIH also requires that summary results of those studies be made available to the public. Submission of the complete results for any clinical trial to ClinicalTrials.gov must include information on the age of the enrolled participants overall and in each study arm. (A study arm is a group of people in a clinical study who receive a specific drug, medical device, or other intervention.) Age may be listed as categorical variables (data that can be divided into discrete groups such as children, adults, and older adults) or as a summary statistic, such as mean age with a standard deviation or median age with minimum and maximum values.

As we include individuals from across the lifespan in research, it’s important to be clear about which variables are being tested or measured. One way that NIH supports this is by encouraging researchers to employ similar concepts and terms across a range of research programs, for example, by using common data elements in clinical research, patient registries, and other human subjects research, in order to improve data quality and opportunities for comparison. NLM hosts NIH’s Common Data Element (CDE) Resource Portal, which provides access to information about NIH-supported CDEs, as well as tools and resources to assist investigators in developing protocols for data collection.

NIH’s focus on age in research endeavors is yielding positive results, and I’m happy to be able to share articles from NLM’s own PubMed collection that highlight research addressing various age groups. Here are a few specific to older adult populations:

And here are several specific to the pediatric population and those under age 18:

At this point in my life, I’m pleased to know that NIH and the National Library of Medicine supports science that is inclusive of populations across the lifespan, as well as literature and other accounts that record and make available the results of this type of research!

In the future, we will not only have a better understanding of what makes someone healthy or responsive to treatment at a given age, but we’ll be better able to use health data collected in the early stages of life to predict outcomes in older populations.

This scientific crystal ball will benefit all of us. What would you like to ask it?