A Peek into the Inner Workings of NLM’s Health Information Services

Guest post by Dianne Babski, Associate Director for Library Operations at NLM

How does an organization like NLM build and deploy 21st century products and services to support a global user audience? I’d like to give you a behind the scenes glimpse into NLM’s ever-evolving operations, and how we continue to develop the health information resources that you know and love, such as MEDLINE/PubMed, Medical Subject Headings (MeSH), and MedlinePlus.

Agile Product Development

NLM continues to move towards agile product development and digital unification. Where we used to release enhancements and features once or twice a year, we now develop incrementally and release product enhancements frequently. NLM supports innovation in our workforce by empowering product owners to make data-driven decisions through usability reviews and analytics of features, page views, and user requests to inform future actions.

We encourage staff to ask, “Are we meeting users’ needs—now and into the future?”

We have seen the success of this approach in the rollout of DOCLINE, our interlibrary loan request routing system, and the redesign of PubMed. We are in the planning phase of modernizing our flagship clinical trials registry and repository, ClinicalTrials.gov, to deliver an improved user experience on an updated platform to accommodate growth and enhance efficiency. We also embarked on the recommendations of several studies to increase the automation of MEDLINE Indexing. This involves incorporating machine learning and computational algorithms to apply MeSH terms to PubMed citations. As a result, the time for MEDLINE citations to be searched as indexed with MeSH in PubMed will be dramatically reduced, and, more importantly, will better leverage NLM staff expertise around chemical and gene names to enhance discoverability.

Data-Driven and Data-Informed

NLM uses data to balance our portfolio of products and offerings. I like to use the analogy of thinning garden beds to make room for healthier and stronger plants.  We created evaluation measures to review our products and services, which allow us to make data-driven and data-informed decisions to streamline, simplify, and optimize NLM’s portfolio of offerings.

NLM Herb Garden

One key principle is to consolidate information into fewer platforms for improved user experience, discoverability, and efficiency. Pruning our garden allows us to focus on products that are unique, high-quality, and trusted resources. I think we can all agree that it’s more difficult to find what you need when information is scattered and disparate. This has informed the retirement of some products that are no longer sustainable or have a succession plan, or low or declining usage. And while a product may no longer exist as a stand-alone product, we have ensured that data and information from those products are integrated into others, made available for download, or both. For example, by integrating Genetics Home Reference and GeneEd data, we enhanced and made MedlinePlus more robust.

Other agencies or organizations sometimes have equally sufficient information and resources available that duplicate efforts. For example, this is true for the resources held in our Disaster Information Management Research Center (DIMRC), which we have begun retiring by limiting updates to select resources, such as Disaster Lit. This resource is currently only updated with COVID-19-related information as the product (or data) transitions ownership to other organizations. Meanwhile, much of the grey literature from Disaster Lit will remain available in the Digital Collections or the NLM Bookshelf.

To help users navigate NLM collections, we are upgrading our Integrated Library System infrastructure with a cloud-based library services platform. The new platform will allow for better systems integration, collaborative functionality, and community features to keep pace with the data demands of a digital ecosystem and enable better distribution to libraries worldwide. Stay tuned for a new and improved Catalog!

A Common Data Language

As a standards organization, NLM designs and integrates products to make information Findable, Accessible, Interoperable, and Reusable (FAIR). Following the FAIR data principles, an interconnected ecosystem of biomedical data, tools and software enables faster research conclusions and resulting publication(s).

NLM’s goal is to link different but related digital research objects, such as articles, data sets, visualization tools, and predictive models, to advance discovery within our vast collection and resources beyond NLM. For example, in response to the global COVID-19 pandemic, we quickly processed provisional out-of-cycle codes and terms from terminology sources in UMLS, RxNorm, SNOMED CT, and VSAC, added new MeSH and supplemental concept records, and new COVID-19-related Common Data Elements (CDEs) in the NIH CDE Repository. NLM also convened a trans-NIH team to identify NIH-endorsed data elements. We are extremely proud of the role we played in accelerating the interoperability and discoverability of critical COVID-19-related information to help solve a global health crisis.

Looking ahead to January 2023, NIH will adopt a new NIH Policy for Data Management and Sharing, requiring NIH-funded researchers to prospectively submit a plan outlining how scientific data from their research will be managed and shared. In response, NLM developed the Dataset Metadata Model (DATMM), designed to describe biomedical research datasets to drive discoverability and re-use of shared research data.

Serving Society

NLM connects globally to a large and diverse mix of stakeholders both in public and private sectors. Our products and services—no matter how agile, digital, or interconnected—would be nothing without our valued users.

We intentionally aggregate diverse data and analytical tools into our collections to advance research on factors such as biological, genomic, social, behavioral, and environmental impacts on health, and characteristics such as sex, gender, age, race and ethnicity. Working with other standards development groups, we are actively involved in efforts to represent sex, gender, race, and social determinants of health in their resources. We develop reliable health information in visual ways that are accessible to broad audiences, including users with low literacy. For example, MedlinePlus offers a series of brief videos (in English and Spanish) covering several popular health topics, and maintains a Health Information in Multiple Languages Collection featuring more than 60 languages to support the information needs of a global audience.

In its 2021-26 funding cycle, the NLM-supported Network of the National Library of Medicine has a new goal to “advance health equity through information”, and will focus on serving underrepresented populations. NLM remains committed to addressing the challenge of health disparities and seeks new ways to provide understandable and trusted health information resources in a variety of ways to support a broad spectrum of users.

I hope this peek inside of NLM gives you a sense of the ways that our dedicated staff are striving to meet the digital demands of the 21st century. Using our strategic plan as a roadmap, we continue to evaluate and develop products with our diverse user base in mind, and recognize that sometimes we need to rethink, rebuild, and reduce our presentation structures.

We’d love to hear how you are reimagining your services. Until next time, may your garden of health and knowledge blossom this spring!

Dianne Babski is responsible for the overall management of one of NLM’s largest divisions, Library Operations, with more than 450 staff providing health information services to a global audience of health care professionals, researchers, administrators, students, historians, patients, and the public. She oversees budget, facilities, administration, and operations, including of a national network of more than 8,000 academic health science libraries, hospital and public libraries, and community organizations to improve access to health information.

NNLM and COVID-19: Adapting to a New Normal

Guest post by Martha Meacham, MA, MLIS, NNLM Project Director

The NLM’s Network of the National Library of Medicine (NNLM) has a long, successful history of promoting access to and education about high quality health information, improving the health and health literacy of all. The COVID-19 pandemic may have changed how we approach our work, but our goals and successes have not changed. Adaptability, without sacrificing the quality and impact of our programs, is at our core. We’ve discovered new possibilities and engaged communities in new ways. These are just a few stories from across NNLM.

NNLM will operate throughout seven regions across the United States beginning in May 2021.

Even before the onset of the COVID-19 pandemic, NNLM had expertise conducting virtual programming due to the hundreds of events and classes offered each year. NNLM’s expertise was leveraged to expand our programming by transforming in-person events to virtual experiences, including virtual trainings, book clubs, and online symposiums addressing misinformation about COVID-19 — all with the goal of continuing to engage with communities.

Kiri Burcat, a Data and Evaluation Coordinator with the NNLM says, “NNLM was well-equipped for the COVID-19 work environment. With our regional/national collaborative model, we were used to video conferencing, long-distance collaboration, and online learning. While I hope to see my colleagues across the country in-person again soon, I also hope that this experience will lead us to experiment with different ways to keep online learning fresh and engaging.”

An attendee from one of NNLM’s virtual book club events shared how adapting to a virtual format provided different opportunities for the community, “I was at the Hood River Public Library and saw a book that caught my eye being given out at the COVID-safe space in the lobby. I learned about the upcoming author talk and the NNLM’s role in this effort. I was so impressed. I sent out a notice to my friends and encouraged them to join me in sharing the information on the book’s availability and the January 14th livestream event on Facebook and other social media to help reach more people. How inspirational! Thank you!”

Even with the restrictions of COVID-19, NNLM enabled its partners to continue their community outreach and engagement efforts. Cara Burton, System Director, Eastern Shore Public Library, Accomac, VA, highlighted, “The free print materials are very helpful in our outreach to poor, rural areas. For example, [NNLM-selected precision medicine] materials were distributed during COVID-19 in library packets at the public school free-meal pick-up sites. The NNLM staff did great outreach.”

NNLM coordinators across the country work closely with partners and member organizations to create and maintain high-quality work. “I have been incredibly inspired by the tenacity and innovation of our members who had to reinvent their organizations and services all at once to provide for their communities — and did so with excellence,” says Network Engagement Coordinator, Nancy Patterson.

The COVID-19 pandemic revealed opportunities for education on new topics and brought attention to needed skills. For example, a group within the NNLM organized a webinar series, Identifying and Combating Health Misinformation, featuring expert speakers who discussed various aspects of online health misinformation, how to identify it, and how to help curb its spread. After attending an event, one participant noted, “All of it was helpful. It will assist in better educating others on vaccines, the importance, and ways to know what is and what is not misleading information.” Another attendee noted that a benefit of the class was, “Learning about various ways misinformation can be spread. and learning about ways to stop the spread of misinformation.”

In another example of unique and timely programming, Liz Waltman, NNLM Outreach, Education, and Communications Coordinator notes, “The NNLM has had the opportunity to highlight the work our members are doing at this time. In particular, the webinar about evaluating information during COVID-19 was well attended and received.”

NNLM maintains its commitment to providing high quality educational and engagement opportunities for medical librarians and other professionals. Miso Lee, a data analyst with the University of Texas Medical Branch in Galveston, TX writes, “I am really grateful for [the] professional development award that allowed me to get the training I need. Second, I like informational webinars, particularly those related to COVID-19. I learned several creative ideas from other organizations.”  

The resilience and adaptability of NNLM, founded on its unique expertise and experience, enabled this network of more than 8,000 academic health science libraries, hospital and public libraries, and community organizations to stretch, grow, and keep NLM relevant to communities, including medically underserved communities. Looking forward, NNLM will nurture the partnerships and approaches it has gained from this experience as it continues to expand and deepen NLM’s presence in communities across the country.

COVID-19 certainly has brought about changes and challenges, but through the great efforts of the NNLM staff and the wonderful work of its members and community partners, we remain strong and dedicated in these times.

Check out this upcoming series exploring the impact of COVID-19 and sign up here.

Martha Meacham is the Project Director of NNLM. Martha is a passionate advocate for improving the health of all through access to and understanding of health information.

Progress Towards a Modernized ClinicalTrials.gov

Guest post by Rebecca Williams, PharmD, MPH, acting director of ClinicalTrials.gov at the National Library of Medicine, National Institutes of Health.

In 2019, NLM introduced a multi-year effort to modernize ClinicalTrials.gov, the world’s largest publicly accessible database of privately and publicly funded clinical trials. This effort was launched with a commitment to engage with and serve the millions of users who rely on this essential resource — with a focus on delivering an improved user experience on an updated platform that will accommodate growth and enhance efficiency.

In keeping with that promise, NLM has embarked on several stakeholder activities as part of the roadmap for modernization that we want to highlight in this post. We will also continue to share opportunities for involvement and invite you to join us for an upcoming webinar on February 18, 2021 at 3 pm ET to learn more about our modernization efforts.

Starting Out

Early in the process, our modernization team reached out to stakeholders through a request for information (RFI) to solicit input on topics around website functionality, information submission processes, and use of data standards. We received nearly 270 responses, which were summarized and discussed during a virtual interactive public meeting held in April 2020, and attended by nearly 400 participants. This robust feedback from the stakeholder community, along with input gathered from leaders and stakeholders across the NIH, provided the foundation to identify high-impact user-driven goals and set priorities. Currently, to advance the crucial next step of setting modernization goals and priorities, the team is working closely with NLM’s Board of Regents Public Service Working Group on ClinicalTrials.gov Modernization. Members in this group represent a range of stakeholder perspectives and provide input to ensure the continued integrity and utility of ClinicalTrials.gov.

Serving Stakeholders

Feedback received in response to last year’s RFI revealed several themes for modernizing ClinicalTrials.gov including ways to improve the management of search results, study records, and plain language information for the website, as well as enhancements to support structured and unstructured data, the quality control review process, and workflow management for information submission.

Three key external stakeholder groups were identified and consist of diverse individuals that share common interests and goals, but also have unique circumstances and needs. Feedback received from our engagement efforts, as well as the working group, reinforce the importance of being able to serve all stakeholders, including:

  1. Data providers, who are responsible for submitting, updating, and managing clinical trial registration and results information through the ClinicalTrials.gov submission system, also known as the Protocol Registration and Results System (PRS). The clinical trial information provided by this stakeholder group is listed on ClinicalTrials.gov for use by others.

2.Patients and their advocates, who find and use information about clinical trials for themselves or others through ClinicalTrials.gov. 

3. Data researchers, who use clinical trial information to study the clinical research enterprise, such as detecting trends in research and gaps in medical knowledge, identifying trials for use in systematic reviews and meta-analyses, and validating reported outcome measures and study design through ClinicalTrials.gov or its application programming interface, or API.

We aim to ensure that:

  1. Clinical trial information is current, complete, and reliable.
  2. All users can easily find and use information about clinical trials.
  3. Clinical trial information, resources, and tools provide value to the research ecosystem.

Looking Ahead

NLM is employing a user-centered design approach to modernization. This includes user feedback loops and prototypes to elicit user input on new features in an iterative manner. A new version of the ClinicalTrials.gov website will be released first, in parallel to the current website, to obtain maximum user input. Work on the website began with extensive planning and research and has since shifted into implementation that includes building the technical foundation in a cloud-based platform; designing key elements for the homepage, search results, and study records; and testing approaches for the continuous improvement of search results. We expect to release the new website for broad user testing by Fall 2021. Work related to the PRS is in the planning and research stage, with prototype development underway.

As ClinicalTrials.gov and the PRS undergo “construction,” be assured that one of the core principles guiding NLM’s ClinicalTrials.gov modernization effort is to minimize disruption to our users while continuing to deliver improved services to maximize the value of this resource to the people who rely on it.

We are also developing continuity approaches for the PRS, management portal, and website to ensure a smooth transition to updated features. We will continue to provide stakeholders with updates and a timeline of activities as they become available.

Stay Informed and Involved

NLM is committed to keeping you informed throughout this modernization effort. We invite you to join us for an upcoming webinar on February 18, 2021 at 3 pm ET where you will receive additional updates on our modernization efforts and learn about future opportunities for you and your communities to be involved. To register, please visit the ClinicalTrials.gov webinar registration page.

Rebecca Williams, PharmD, MPH, oversees the ClinicalTrials.gov program. Her research interests involve improving the quality of reporting of clinical research and evaluating the clinical research enterprise.

A Journey to Spur Innovation and Discovery

Guest post by Valerie Schneider, PhD, staff scientist at the National Library of Medicine’s National Center for Biotechnology Information, National Institutes of Health.

It’s been said that nature is the best teacher. When it comes to understanding human biology and improving health, examples abound of the advances that have been made from the study of a diverse set of non-human organisms. Over the last two centuries, the study of nematode worms has taught us about longevity and mRNAs (the biological molecule that is the basis for several COVID-19 vaccines), common fungi about cell division and cancer, and fruit flies about many things, from the role of chromosomes in heredity to our circadian rhythms. The ability to create targeted alterations in the genomes of model organisms has been transformative for studies to establish the function of specific genes in the etiology of human disease.

The modern era of genomic biology, in which genome sequencing and assembly are accessible to more researchers than ever before, provides data from an even greater range of organisms from which we might learn. Today, we rely not only on primate models, but on a whole host of species: for example, swine to understand organ transplantation, songbirds to understand vocalization and learning, and bats and pangolins to teach us about the evolution of the SARS-CoV-2 virus and how to fight its spread.

These rapidly growing collections of sequence and other data on species across the tree of life offer enormous promise for discoveries that have the potential to improve human health. To better enable such discoveries, with the support of NIH, NLM is planning a major modernization of its resources and their underlying infrastructure.

This modernization will support the needs of users engaged in data search and retrieval, gene annotation, evaluation of sequence quality, and comparative analyses. The new infrastructure, user interfaces, and tools should result in an improved experience for researchers doing a wide range of work, and also facilitate better data submissions.

This revamping aligns with NIH’s Strategic Plan for Data Science, which provides a roadmap for modernizing the NIH-funded biomedical data science ecosystem, as well as NLM’s Strategic Plan, which furthers NLM’s commitment to provide data and information to accelerate biomedical discovery and improve health. NLM and NIH are committed to providing researchers with modern, stable, and cloud-oriented technologies that support research needs.

Over the last few years, NLM has demonstrated this commitment by re-designing several flagship products, including the PubMed database for searching published biomedical literature, the ClinicalTrials.gov database of information on privately and publicly funded clinical trials, and the Basic Local Alignment Search Tool (BLAST) for finding regions of similarity between biological sequences. As part of NIH’s Science and Technology Research Infrastructure for Discovery, Experimentation, and Sustainability (STRIDES) Initiative, NLM also made the data from its massive (36 petabyte) Sequence Read Archive (SRA) available on two commercial cloud platforms, facilitating large-scale computational research that would otherwise be difficult for many researchers. Revamping these resources has positioned them to support both the current and future needs of NLM’s diverse audience of researchers, clinicians, data scientists, educators and others.

Importantly, this current initiative to modernize NLM products, tools, and services, and concurrently develop content, will include extensive engagement with the research community, just as we’ve done with previous re-design efforts. The NLM is committed to offering interfaces accessible to both novices and experts. Additionally, NLM believes a key part of the next generation of its data resources requires an infrastructure that supports an ongoing, dynamic exchange of content, including contributions of metadata and gene functional information from knowledge builders in the community to complement and enhance NIH-provided content.

Community engagement will also ensure that externally sourced content is provided in ways that maintain the high value and trustworthiness of the datasets. Additionally, data connections that make the content of this new resource accessible to external knowledgebases containing other datatypes, such as images, will further promote integrative data analyses that support scientific discovery.

Many opportunities exist to streamline processes, look across resources, and gain insights that will provide new ways of learning. Through NLM’s continued commitment to modernization initiatives, we are ready to again improve the user experience for accessing, analyzing and visualizing sequence data and related information. Nature continues to be our best teacher — and we are now poised to learn from her in an exciting new classroom.

We invite you to come on this journey with us.

Valerie Schneider, PhD, is the deputy director of Sequence Offerings and the head of the Sequence Plus program. In these roles, she coordinates efforts associated with the curation, enhancement, and organization of sequence data, as well as oversees tools and resources that enable the public to access, analyze, and visualize biomedical data. She also manages NCBI’s involvement in the Genome Reference Consortium, the international collaboration tasked with maintaining the value of the human reference genome assembly.

MedlinePlus Connect: 10 Years of Linking Electronic Health Records to Consumer Health Information

Guest post by Jennifer Jentsch, MLS, Project Manager, MedlinePlus Connect, National Library of Medicine

NLM is celebrating the 10th anniversary of MedlinePlus Connect, a free service that links electronic health records (EHRs), patient portals, and other health IT systems to relevant, authoritative, and up-to-date health information from NLM’s MedlinePlus health information resource and other NIH websites. A look back over the past 10 years highlights opportunities that came together to create this successful NLM resource.

Development of MedlinePlus Connect

We know that having access to information empowers people. When it comes to a person’s health, information is fundamental in helping people learn about their conditions, medications, and treatment options, and helps them make more informed decisions about their health. We also know that to facilitate this understanding, health care professionals need to point the people they treat to trusted, accurate health information that is easy to understand. Quality information is an essential component of quality health care.

With the release of the MedlinePlus and MedlinePlus en español websites in the late 1990s, NLM quickly became a trusted source of quality online health information for the public. A decade later, a new health information need began to emerge. Health care providers were rapidly transitioning from paper health records to EHRs. The EHR system itself became a new platform for the delivery of health education, where both patients and providers could easily access explanatory resources about a diagnosis, medication or medical test. The sharing of trusted health information between provider and patient was migrating to an entirely electronic, yet personalized, environment.

In these emerging EHR systems, NLM saw an opportunity to leverage the rich resources of MedlinePlus and serve the public in a new way.   

The idea became reality with the launch of MedlinePlus Connect in 2010. NLM used the expertise of staff in data science, medical code systems, health data standards, and information technology to build this innovative service. The team created an Application Programming Interface (API) to seamlessly bring the rich consumer health resources of the MedlinePlus and MedlinePlus en español websites directly into EHRs. Tens of thousands of pages about diseases and conditions, medications and lab tests were now accessible for use in a new way. 

How It Works

MedlinePlus Connect is a free web application and web service that does not require registration to use. It works by accepting specific requests from EHR systems in a customized HTTPS format and responds with links to relevant information.

In the course of patient care, health care professionals assign medical codes for particular diagnoses, tests, procedures, and medications to the health records of patients. MedlinePlus Connect uses these codes to provide patient-specific health information to the EHR system.

As part of NLM’s commitment to health data standards, MedlinePlus Connect uses standard medical code systems like SNOMED and LOINC, and adheres to the Infobutton standard. To facilitate the connection with EHRs, NLM staff create “mappings” (or associations) between MedlinePlus content and standard medical coding systems used in EHRs. Today, MedlinePlus Connect supports half a dozen major code systems for diagnoses, medications, procedures, and medical tests, including ICD-9-CM, ICD-10-CM, SNOMED, and RxNorm.

MedlinePlus Connect Today and into the Future

Since its launch, MedlinePlus Connect has been employed by a wide array of users, including large and small EHR systems, health care networks and organizations, hospital systems, and mobile applications. The API has grown significantly in usage, in content, and in code mappings. (See our timeline infographic for important developments over the past 10 years.)

See how MedlinePlus Connect has grown over the past 10 years.    Image credit: Brenna Cox

Today, MedlinePlus Connect provides a robust service that can easily respond to more than 171,000 medical codes with relevant health information.  In 2020, MedlinePlus Connect received 252 million code requests from external systems.

An exciting new initiative is the integration of consumer health information from other NIH Institutes and Centers (ICs). In 2018, MedlinePlus Connect piloted a collaboration with the National Institute of Diabetes and Digestive and Kidney Diseases. The success of this collaboration led to the participation of two additional NIH Institutes: the National Institute on Aging and the National Cancer Institute . NLM is working with other NIH ICs in this effort to expand the scope of content in MedlinePlus Connect.

The next major development will be the addition of Current Procedural Terminology (CPT®) codes from the American Medical Association to expand access to information about medical procedures.

As MedlinePlus Connect enters a new decade, we can’t help but reflect on how the goals behind the service remain very much the same as they were when this service launched:  to deliver health information to the public in new and innovative ways, to reduce barriers in information access, and to support quality health care everywhere.

Interested in learning how to implement MedlinePlus Connect?  Read our documentation and contact us with questions. Sign up for the MedlinePlus Connect email list to keep up with developments and exchange ideas with other users.

Jennifer Jentsch, MLS, joined NLM in 2001 and has supported a variety of NLM health information products including PubMed, PubMed Central, and MedlinePlus. Since 2014 she has served as Project Manager for MedlinePlus Connect.