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.

Upcoming Training Opportunity: University-based Training for Research Careers in Biomedical Informatics and Data Science

Guest blog by Valerie Florance, PhD, Director of NLM’s Division of Extramural Programs

Explore the Training

NLM’s Extramural Programs Division is a principle source of NIH funding for research training in biomedical informatics, applying approaches in computer and information science to challenges in basic biomedical research, health care, and public health administration. NLM’s support fundamentally shapes the education, training, and advancement of biomedical informatics nationally. For decades, NLM has sponsored university-based training for predoctoral and postdoctoral fellows to prepare them for research careers. These programs support NLM’s long-term investment strategy to help influence and impact the field of biomedical informatics and data science.

Last October, NLM published NOT-LM-21-001 in the NIH Guide for Grants and Contracts to allow potential applicants sufficient time to develop meaningful collaborations and responsive projects. This program, a model among NIH training programs, advances training with big data in biomedical informatics and produces interdisciplinary, researchers that fully comprehend the challenges of knowledge representation, decision support, translational research, human-computer interaction, and social and organizational factors that influence effective adoption of health information technology in biomedical domains. This notice was the first step in a year-long process that will result in new 5-year grant awards that begin in July 2022. You’ll find the notice outlines the expected timetable for publishing the funding opportunity announcement, accepting applications, reviewing them and making awards.

The solicitation for new applications will be published in the NIH Guide for Grants and Contracts in March with applications due in May. For those interested in applying for an NLM training grant for the first time, we encourage a review of the previous solicitation to get a sense of the data and programmatic descriptions that are required for a training grant application.

Because issuance dates for the next competition are estimates, it is also helpful to subscribe to the weekly Table of Contents emails from the NIH Guide for Grants and Contracts. The extra benefit of this weekly mailing is that it lists all new funding issuances from NIH plus important notices about policy changes.

A Strong Foundation

NLM’s training programs offer graduate education and postdoctoral research experiences in a wide range of areas including health care informatics, translational bioinformatics, clinical research informatics, public health informatics, and biomedical data science. Each of these programs offer a combination of core curriculum and electives. In the current 5-year cycle, seven programs also offer special tracks in environmental exposure informatics supported by NIH’s National Institute of Environmental and Health Sciences.

A decades-old project, the university-based training initiatives is one of NLM’s signature grant programs. NLM’s training programs have produced many leaders in the field of biomedical informatics. Past trainees have taken positions in academia, industry, small businesses, health care organizations, and government. Currently, NLM supports 200 trainee positions at 16 universities around the United States and provides funding each year for up to 40 short-term trainee positions that are used to help recruit college graduates to our field by providing introductory training and research opportunities. To develop a sense of community among the trainees, NLM brings its trainees together each year, apart from those falling within a pandemic year, for an annual conference hosted at one of the university sites.

You can find a map with links to descriptions of the current programs here. The website also provides links to information about past annual conferences – check out past agendas to get a sense of the broad scope of science across the field of biomedical informatics.

Attendees comparing notes at NLM Informatics Training Conference 2017 in La Jolla, California

Did you take part in this training? What was your favorite thing about this experience? What advice would you give to current students? How can we make the program even better?

 Dr. Florance heads NLM’s Extramural Programs Division, which is responsible for the Library’s grant programs and coordinates NLM’s informatics training programs.