Celebrating 20 Years of ClinicalTrials.gov and Looking to the Future

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

As ClinicalTrials.gov celebrates its 20th anniversary on February 29, 2020, we’re asking for your input on how it can best continue to serve your needs for many more years to come.

ClinicalTrials.gov is the world’s largest public clinical research registry and results database, giving patients, families, health care providers, researchers, and others easy access to information on clinical studies relating to a wide range of diseases and conditions. This online resource, which has more than 145,000 unique visitors every day, is operated by NLM and makes available information provided directly by the sponsors and investigators conducting the research.

NLM has launched an effort to modernize ClinicalTrials.gov to deliver an improved user experience on an updated platform that will accommodate growth and enhance efficiency. Creating a roadmap for modernization requires feedback from a wide array of stakeholders on how to continue serving, balancing, and prioritizing their varied information needs. These stakeholders include sponsors and investigators who submit clinical trial information to the site, academic institutions, nonprofit and advocacy organizations, government agencies, and the public, all of whom can access and use the information that ClinicalTrials.gov contains free of charge.

To obtain timely, detailed, and actionable input, we have issued a Request for Information (RFI) to solicit comments on the following topics: website functionality, information submission processes, and use of data standards.

Recognizing that ClinicalTrials.gov supports a network of stakeholders who contribute to, and rely on, clinical research, our aim is to understand how the system can better support this network and to identify opportunities for improving its compatibility with existing clinical trial management tools and processes. It is important to note that this RFI focuses on the functionality of ClinicalTrials.gov and is not intended to modify existing legal and policy requirements for clinical trial registration and results submission.

Over its 20-year history, ClinicalTrials.gov has helped shape the way in which clinical trial information is made transparent and discoverable to the public (see figure 1). In 2000, sponsors and investigators began submitting structured summaries of clinical trial protocols for the public to view. Over time, new policies and laws reinforced this practice, and ClinicalTrials.gov now contains over 320,000 study listings, with 56,000 studies currently seeking participants.

In 2008, ClinicalTrials.gov added its results database for sponsors and investigators to share summary results after trial completion. There are now over 40,000 results summaries posted on ClinicalTrials.gov, providing the public with timely access to information that may not be available in the peer-reviewed literature.

Figure 1: Total number of posted study records per year on ClinicalTrials.gov and timeline of major events from 1997 to 2019

Sharing information throughout the life cycle of a clinical trial (see figure 2) supports conduct of a landscape analysis prior to conducting new research and advances important public health goals, including supporting people who are looking to participate in clinical research, tracking the progress of clinical trials, allowing for the evaluation of the integrity of reported research, and providing more complete clinical trial information to help inform patient care. The modernization effort currently underway builds on the solid foundation established during the last 20 years.

Figure 2: Role of ClinicalTrials.gov in supporting use and sharing of information throughout the study life cycle

Share Your Feedback!

Responses to the RFI must be received by March 14, 2020. We expect a wide range of comments and are taking steps to manage and share the feedback. We will summarize the responses during a public meeting on April 30 on the main campus of the National Institutes of Health in Bethesda, Maryland, that will also be accessible by webcast. Details on the meeting will be available soon. In addition, we are engaging the NLM Board of Regents to provide input as we develop a roadmap for modernization, including establishing priorities and identifying the roles that various stakeholders might play in modernizing ClinicalTrials.gov.

Want to Learn More?

To learn more about the RFI and how to share your feedback, please join us for a webinar on January 22. We look forward to working with you to learn more about — and consider how to meet — your needs as we embark on this multiyear modernization effort.

Photo of Rebecca Williams, PharmD, MPH

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.

The Pursuit and Power of Alignment

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

As a staff scientist at NLM, I’ve found that our strategic plan has become a valuable framework for organizing our mission and providing direction and focus—especially when we’re talking about data science.

A recent project at NLM’s National Center for Biotechnology Information (NCBI) highlights why it’s important to ensure alignment between projects and strategy.

As host to the world’s largest repository of biological sequence data, NCBI provides access to data that are critical to understanding and advancing human health. While users have been searching NCBI’s sequence databases long before the strategic plan was developed, it might be easy to overlook how an effort like the strategic plan has anything to do with the larger picture. When you look, though, it’s easy to see the relationship.

Providing a Common Search Experience

Connecting the resources of a digital research enterprise and advancing research and development in biomedical informatics and data science are just a few of the important objectives in NLM’s strategic plan. We’ve improved the experience of users searching for several types of common sequence-associated data by providing a more comprehensive interpretation of their queries and a new results interface that provides easy access to NCBI’s best results, regardless of the database in which they search.

Our team tackled this effort through extensive user interviews, iteratively developing solutions, and monitoring the usage of those solutions.

We improved searches for the reference set of genes and genomes in all species across multiple NCBI databases by supporting common language queries and using features like auto-suggest. We enhanced the ability to search and access clinically important datasets, such as human variations housed in ClinVar and dbSNP, NCBI’s variation databases, as well as resources with information about antimicrobial resistance genes and viral pathogens.

We also created displays that aggregate the results from different databases and enable easy downloads of data and access to analysis tools. Our new interactive graphics and web page displays allow for the visualization of sequences and the analysis of homologous gene sets. Knowing that NLM users rely on different technologies to access data, we ensured that the displays work on both traditional computers and mobile devices.

Since the first release of these search enhancements in late 2018, they are now triggered in a quarter of all searches in the scoped databases. We’ve seen a 300% increase in their use, with more than 300,000 users clicking on the content they offer in just the month of October 2019. These products have provided results for over 500,000 searches that previously would have returned no content. Regular monitoring of their use helps us make sure that we continue to facilitate search and deliver high-value data.

NLM’s strategic plan gave us the user-centered framework in which to execute the goals of this project. So much of the work we do at NLM is consistent with the goals and specific objectives of the plan — it provides a structure for evaluating our work and making sure that we continue to be forward-looking.

And the strategic plan helps me, as a staff scientist, to identify new areas for work that will best enable NLM to continue delivering a platform for biomedical discovery and data-powered health.

To stay up to date on NCBI projects and research, follow us on Twitter.

Photo (headshot) of Valerie Schneider, PhD
Valerie Schneider, Ph.D.

Valerie Schneider, PhD, is the deputy director of Sequence Offerings and the interim head of the Sequence Delivery 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.

Addressing Social Determinants of Health with FHIR Technology

Guest post by Clem McDonald, MD, Chief Health Data Standards Officer at NLM; Jessica Tenenbaum, PhD, Chief Data Officer for North Carolina’s Department of Health and Human Services; and Liz Amos, MLIS, Special Assistant to the Chief Health Data Standards Officer at NLM.

We all know that whether you get an annual flu shot or smoke affects your health. But nonmedical social and economic factors are also large influences on health. For example, individuals will struggle to control their diabetes if they can’t afford healthy food or are sleeping on the street. Healthy People 2020 describes such circumstances as social determinants of health (SDOH). As our health system shifts to value-based payments models, health care systems are prioritizing outcomes, such as the level of glucose control, rather than how much care is delivered (e.g., the number of visits or tests). To achieve better health outcomes, leading organizations are working to identify and address SDOH needs as well as medical needs.

The North Carolina Department of Health and Human Services (NCDHHS) Healthy Opportunities program identifies four priority domains of non-medical needs that can be detected using the answers to screening questions. Screening for needs in these domains will be a standard operating procedure for all Medicaid beneficiaries as the state transitions its Medicaid program to managed care from fee-for-service. Health care providers will be able to refer individuals to community resources such as food pantries, homeless shelters, transportation services, interpersonal violence counselors, and other services that can address some of these nonmedical needs, and the organizations can then be reimbursed for approved services under Medicaid. A computer-based “closed-loop” referral system will enable the collection of information from social service organizations about the services provided, allowing NCDHHS to facilitate reimbursement, monitor the program, and assess its effectiveness. Electronic systems like the one being used in North Carolina are essential to capturing answers to the SDOH screening questions, triaging individuals to appropriate community resources for intervention, and tracking the effects of those interventions. North Carolina is building a “learning” Department of Health and Human Services, similar to a learning health system, with data collected through services provided used to inform future policy decisions.

The SDOH needs being addressed in North Carolina exist across the country, so there is considerable interest in developing standards-based systems for capturing SDOH data anywhere in the United States without the need for separate development efforts at each stage. A powerful mechanism called Fast Healthcare Interoperability Resources®, or FHIR®, has emerged to enable standardization across a broad spectrum of health care processes. Developed by Health Level Seven International, FHIR is a modern, web-based technology for exchanging health care data that has strong and growing support from various stakeholders in the field of health care, including major electronic health record vendors; the tech industry, including Apple, Microsoft, Google, and Amazon; and federal agencies such as NIH, the Office of the National Coordinator for Health Information Technology, the Centers for Medicare and Medicaid Services, the Food and Drug Administration, and the Agency for Healthcare Research and Quality. NCDHHS is exploring the use of a FHIR-based data-capture tool for collecting SDOH information about nonmedical health needs and delivering the survey results to health care providers who can address the needs identified.

Created in the spirit of collaboration, NLM’s FHIR questionnaire app — an open-source tool that can be used, modified, or incorporated into existing tools by anyone — instantly converts a questionnaire that follows FHIR’s technical specifications into a live web form. It leverages the FHIR standard to collect questionnaire data, and generating a different form is just a matter of feeding the tool a different set of questions. FHIR forms can implement skip logic, the nesting of repeated groups of questions, calculations, validation checks, the repopulation of questions with answers from the individual’s FHIR medical record, and more. Of course, the same tool can also implement many other kinds of forms for capturing health care data, such as surveys that measure patient-reported outcomes. You can search more than 2,000 available questionnaires in NLM’s FHIR questionnaire demo app. Other NLM-developed, open-source FHIR-based tools for managing health care data are available here.

NLM and NCDHHS have worked together to develop an open-source, FHIR-based implementation of North Carolina’s Healthy Opportunities screening questions (see figure 1). Anyone with a FHIR-ready server will be able to download the form, enter data, and then route those data to the appropriate health information technology system.

Let’s get to work screening patients broadly while minimizing clinical documentation burdens through the use of standardized application programming interfaces!

 

Figure 1: North Carolina Department of Health and Human Services (NCDHHS)’s Social Determinants of Health (SDOH) Screening Form as a live FHIR Questionnaire demo.
Figure 1: North Carolina Department of Health and Human Services (NCDHHS)’s Social Determinants of Health (SDOH) Screening Form as a live FHIR Questionnaire demo.

 


Clem McDonald, MD

Clem McDonald, MD, is the Chief Health Data Standards Officer at NLM. In this role, he coordinates standards efforts across NLM and NIH, including the FHIR interoperability standard and vocabularies specific to clinical care (LOINC, SNOMED CT, and RxNorm). Dr. McDonald developed one of the nation’s first electronic medical record systems and the first community-wide clinical data repository, the Indiana Network for Patient Care. Dr. McDonald previously served 12 years as Director of the Lister Hill National Center for Biomedical Communications and as scientific director of its intramural research program.

Jessica Tenenbaum, PhD

Jessica Tenenbaum, PhD, is the Chief Data Officer for North Carolina’s Department of Health and Human Services. In this role, Dr. Tenenbaum is responsible for the development and oversight of departmental data governance and strategy to enable data-driven policy for improving the health and well-being of North Carolinians. Dr. Tenenbaum is also an Assistant Professor in Duke University’s Department of Biostatistics and Bioinformatics. Dr. Tenenbaum is a member of the Board of Directors for the American Medical Informatics Association and serves on the Board of Scientific Counselors for NLM.

Liz Amos, MLIS

Liz Amos, MLIS, is Special Assistant to the Chief Health Data Standards Officer at NLM. She is a graduate of the University of Tulsa and the University of Oklahoma.

The Healing Nature of NLM’s Herb Garden

Guest post by Kathryn McKay, writer-editor at the National Library of Medicine 

Stressed?

Perhaps the scent of lavender or the sight of flowers could soothe you.

That’s what a group of gardeners have discovered while tending to the NLM Herb Garden. “When the herbs grasp your soul, you can’t just walk past them,” says Pat Keeney, who helped the garden bloom into what it is today. 

Volunteers from the Montgomery County Master Gardeners care for the more than 125 different herbs, right in front of the Library. Every Monday morning, about a dozen women and men plant and prune herbs and yank weeds. 

Between wiping sweat off their brows and sipping lavender tea, a few of the master gardeners told stories about their love affair with NLM’s Herb Garden. Each of the gardeners has a health story, whether as NIH patients, employees, or plant medicine historians. Started in 1976, the garden began as a way to highlight the healing power of nature.

In the 1980s when then-NIH employee Pat stumbled upon it, there weren’t many plants then—lavender, thyme, boxwood, a few snap dragons. So Pat started caring for them. She recruited friends to help, with varying degrees of success. When her friends started retiring, recruitment got easier. Now, she says, they are “luxuriating in gardeners.”

Summertime in the NLM Herb Garden.
Photo by Karen Kim

One of those gardeners is Jeanne Weiss. In 2014, Jeanne was diagnosed with pheochromocytoma, a rare condition in which tumors, usually noncancerous, develop in the adrenal gland. This diagnosis, along with Jeanne’s Cushing’s syndrome, led her to the NIH Clinical Center, where she received care for six weeks. This world-renowned research hospital provides care for people with rare and unusual diseases, mysterious illnesses, and health conditions that are under clinical investigation at NIH.

“I got the best care in the world. NIH saved my life,” Jeanne says. As a way of giving back, she started volunteering in the garden. Years later, that’s not what keeps her coming back. Jeanne volunteers to enjoy the plants and share her research into the history of the herbs.

She turns to a Lenten rose and explains how it was once used as a method of chemical warfare. “The Greeks put the roots in the water supply, which made people so ill, they couldn’t fight,” she says.

Holding up a leaf of the betony plant, Jeanne says with a wink and a smile that, according to folklore, “if you put a leaf in each nostril, one under your tongue, and a leaf in each hand and under each foot, you might cure your insomnia but not just any kind of insomnia—the kind you get from heartbreak.”

The NLM Herb Garden in front of the National Library of Medicine.
Photo by Kathryn McKay

Gardener Selma Deleon enjoys unearthing trivia on women’s health. “Lady’s mantle appealed to me because of its beauty, but it also amuses me,” she says. “It was called a ‘woman’s best friend’ because it was thought to stimulate the uterus, restore ‘feminine beauty’ after breastfeeding, and more.” She mentions how black cohosh was thought to minimize menopausal night sweats and hot flashes and how mountain mint brewed into a tea was drunk to cure menstrual disorders.

Selma sees the “circle of life in the garden” and “the joy of starting something and seeing its growth.”

Sandy Occhipinti understands. She says, “It’s therapeutic to work in and sit in a garden.” Sandy remembers a morning when a young patient from Peru needed exactly this kind of therapy.

As Sandy recalls, the Peruvian girl came to the garden with her father and her nurse. Because her immune system was compromised, this girl couldn’t play with her peers, but she could touch and smell the herbs. Sandy says, “The garden is a respite for so many different people of different nationalities.”

Sandy’s statement is as true for NLM’s staff as it is for visitors. We come from all over the world and we provide access to health resources used by people all over the world.

Thanks to the volunteers who care for it, the NLM Herb Garden provides a sanctuary for us all to relax and rejoice in the healing power of Mother Nature.

Photo of Kathy McKay

 

Kathryn McKay, MA, is a writer-editor at NLM. She is a graduate of the University of Delaware and Johns Hopkins University.

 

Biomedical Discovery through SRA and the Cloud

Guest post by Jim Ostell, PhD, Director of the National Library of Medicine’s National Center for Biotechnology Information, National Institutes of Health.

NLM’s Sequence Read Archive (SRA) is used by more than 100,000 researchers every month, and those researchers now have a tremendous new opportunity to query this database of high-throughput sequence data in new ways for novel discovery: via the cloud. NLM has just finished moving SRA’s public data to the cloud, completing the first phase of an ongoing effort to better position these data for large-scale computing.  

To understand the importance of this move, it’s helpful to consider the analogy of how humans slowly improved their knowledge of the surface of the Earth.

The first simple maps allowed knowledge of terrain to be passed from people who had been there to those who hadn’t. Over the centuries, we learned to sail ships over the oceans and capture new knowledge in navigation charts and techniques. And we learned to fly airplanes over an area of interest and automatically capture detailed images of not only terrain, but also buildings and reservoirs, and assess the conditions of forest, field, and agricultural resources.

Today, with Earth-orbiting satellites, we no longer need to determine in advance what we want to view. We just photograph the whole Earth, all day, every day, and store all the data in a big database. Then we mine the data afterward. The significant change here is that not only can we follow, in great detail, locations or features on the Earth that we already know we’re interested in, as in aerial photography, but we can also discover new things of interest. Examples abound: for instance, noticing a change in a military base, and going back in time to see when the change began or how it developed; or seeing a decline in a forest or watershed, going back in time to see how this decline developed, and then looking geographically to see if it’s happening in other places in the world.

Scientists also can develop new algorithms to extract information from the corpus, or collection, of information. For example, archeologists looking for faint straight-line features indicative of ancient walls or foundations can apply new algorithms to the huge body of existing data to suddenly reveal ancient buildings and cities that were previously unknown.

DNA sequencing has had a similar history, starting from the laborious sequencing of tiny bits of known genomes that could be analyzed by eye (like hand-drawn maps), to the targeting of specific organism genomes to be completely sequenced and then analyzed (similar to aerial photography), to the modern practice of high-throughput sequencing, in which researchers might sequence an entire bacterial genome to study only one gene because it’s easier and cheaper to just measure the whole thing.

However, the significant difference in this analogy is that the ability to search, analyze, or develop new algorithms to explore the huge corpus of high-throughput sequence data is not yet a routine practice accessible to most scientists — as it is for Earth-orbiting satellite data.

Today, scientists expect to be able to routinely explore the entire corpus of targeted genome sequence data through tools such as NLM’s Basic Local Alignment Search Tool (BLAST); very little of the scientific work with genome data is looking for a specific GenBank record. The major scientific work is done by exploring the data in fast, meaningful ways, asking questions such as “Has anyone else seen a protein like this before?”; “What organism is most like the organism I’m working on?”; “Where else has a piece of sequence like this been collected?”; “Is anything known about the function of a piece of sequence like this?” But it has not been possible to do that for the high-throughput, unassembled sequence data, across all such sequences, because that corpus of data has been too big for all but a few places in the world to hold, or to compute across.

This is now changing.

With support from the National Institutes of Health (NIH) Science and Technology Research Infrastructure for Discovery, Experimentation, and Sustainability (STRIDES) Initiative, NLM’s National Center for Biotechnology Information (NCBI) has moved the publicly available high-throughput sequence data from its SRA archive onto two commercial cloud platforms, Google Cloud and Amazon Web Services. For the first time in history, it’s now possible for anyone to compute across this entire 5-petabyte corpus at will, with their own ideas and tools, opening the door to the kind of revolution that was sparked by the availability of a complete corpus of Earth-orbiting satellite images.

The public SRA data include genomes of viruses, bacteria, and nonhuman higher organisms, as well as gene expression data, metagenomes, and a small amount of human genome data that is consented to be public (from the 1000 Genomes Project). NCBI has held, and will continue to hold, codeathons to introduce small groups of scientists to exploring these data in the cloud. For example, during a recent codeathon, participants worked with a set of metagenomes to try to identify known and novel viruses. Other upcoming codeathon cloud topics include RNA-seq, pangenomics, haplotype annotation, and prokaryotic annotation.

Now that the publicly available SRA data are in the cloud, the next milestone is to make all of SRA’s controlled-access human genomic data available on both cloud platforms. Providing access to these data requires a higher level of security and oversight than is required for the nonhuman and publicly available human data, and access must be accompanied by a platform for the authentication and authorization of users, which creates a host of other issues to address. This effort is being undertaken in concert with other major NIH human genome repositories, with guidance from NIH leadership, and with international groups such as the Global Alliance for Genomics and Health (GA4GH).

But, already, the publicly available SRA data are there for biological and computational scientists to take their first dive into the new world of sequence-based “Earth-orbiting satellite photography.” More and more — in research, in clinical practice, in epidemiology, in public health surveillance, in agriculture, in ecology and species diversity — we’ve seen the movement to “just sequence the whole thing.” Now we’ve taken the first step toward the necessary corollary: to “analyze it all afterward.”

In the coming weeks and months, NLM will be making further announcements about SRA in the cloud, with tutorials and updates on the availability of controlled-access human data. For those already familiar with operating on commercial clouds who would like a look at the SRA data in the cloud, you can get started today via the updated SRA toolkit.


Dr. Ostell has had a leadership position at NCBI since its inception in 1988. Before assuming the role of Director in 2017, he was Chief of NCBI’s Information Engineering Branch, where he was responsible for designing, developing, building, and deploying the majority of production resources at NCBI, including flagship products such as PubMed and GenBank. Dr. Ostell was inducted into the United States National Academies, Institute of Medicine, in 2007 and made an NIH Distinguished Investigator in 2011.

To stay up to date on NCBI projects and research, follow us on Twitter.


Enhancing Data Sharing, One Dataset at a Time

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

Circular graphic showing Findable, Accessible, Interoperable, and Reusable aspects of the Vision of the NIH Strategic Plan for Data Science
Vision of the NIH Strategic Plan for Data Science

The National Institutes of Health (NIH) has an ambitious vision for a modernized, integrated biomedical data ecosystem. How we plan to achieve this vision is outlined in the NIH Strategic Plan for Data Science, and the long-term goal is to have NIH-funded data be findable, accessible, interoperable, and reusable (FAIR). To support this goal, we have made enhancing data access and sharing a central theme throughout the strategic plan.

While the topic of data sharing itself merits greater discussion, in this post I’m going to focus on one primary method for sharing data, which is through domain-specific and generalist repositories.

The landscape of biomedical data repositories is vast and evolving. Currently, NIH supports many repositories for sharing biomedical data. These data repositories all have a specific focus, either by data type (e.g., sequence data, protein structure, continuous physiological signals) or by biomedical research discipline (e.g., cancer, immunology, or clinical research data associated with a specific NIH institute or center), and often form a nexus of resources for their research communities. These domain-specific, open-access data-sharing repositories, whether funded by NIH or other sources, are good first choices for researchers, and NIH encourages their use.

NIH’s PubMed Central is a solution for storing and sharing datasets directly associated with publications and publication-related supplemental materials (up to 2 GB in size). On the other end of the spectrum, “big” datasets, comprising petabytes of data, are now starting to leverage cloud service providers (CSPs), including through the NIH Science and Technology Research Infrastructure for Discovery, Experimentation, and Sustainability (STRIDES) Initiative. These are still the early days of data sharing through CSPs, and we anticipate that this will be an active area of research.

There are, however, instances in which researchers are unable to find a domain-specific repository applicable to their research project. In these cases, a generalist repository that accepts data regardless of data type or discipline may be a good fit. Biomedical researchers already share data, software code, and other digital research products via many generalist repositories hosted by various institutions—often in collaboration with a library—and recommended by journals, publishers, or funders. While NIH does not have a recommended generalist repository, we are exploring the roles and uses of generalist repositories in our data repository landscape.

screenshot of NIH Figshare homepage
NIH Figshare homepage https://nih.figshare.com

For example, as part of our exploratory strategy, NIH recently launched an NIH Figshare instance, a short-term pilot project with the generalist repository Figshare. This pilot provides NIH-funded researchers with a generalist repository option for up to 100 GB of data per user. The NIH Figshare instance complies with FAIR principles; supports a wide range of data and file types; captures customized metadata; and provides persistent unique identifiers with the ability to track attention, use, and reuse.

NIH Figshare is just one part of our approach to understanding the role of generalist repositories in making biomedical research data more discoverable. We recognize that making data more FAIR is no small task and certainly not one that we can accomplish on our own. Through this pilot project, and other related projects associated with implementing NIH’s strategy for data science, we look forward to working with the biomedical community—researchers, librarians, publishers, and institutions, as well as other funders and stakeholders—to understand the evolving data repository ecosystem and how to best enable useful and usable data sharing.

Together we can strengthen our data repository ecosystem and ultimately, accelerate data-driven research and discovery. We invite you to join our efforts by sending your ideas and needs to datascience@nih.gov.

Susan Gregurick, PhD

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

Defining the Path Forward for NLM’s New Office of Engagement and Training

Guest post by Amanda J. Wilson, Chief, Office of Engagement and Training, NLM.

During the NLM Board of Regents (BOR) meeting held last week, I had the distinct honor of introducing the new Office of Engagement and Training (OET). This office brings together many of the outreach, training, and capacity-building staff, programs, and services from across the Library.

Since OET was established in June 2019, our team has been occupied with moving into our new space, getting to know one another, exploring the depth and capacity of the resources we have to accomplish our goals, discussing what the future holds for our role in coordinating engagement activities, and reflecting as a team on the niche we fill for NLM. In the midst of this summer flurry of activity and, quite frankly, the more mundane tasks of figuring out the fastest way to answer the door to our offices and the mechanics of mail distribution, some themes surrounding what we can, and hope to become rose to the top.

Our vision for OET is a resource that will serve the NLM community as a strategic connector between NLM and our audiences, as well as across the Library, as a trusted authority on the NLM experience when engaging with Library resources. We are also an incubator for new approaches to engagement.

What, exactly, does that mean?

It means we understand the broad range of both new and existing NLM users, their needs, and the most effective pathways to reach them. And it also means we are closely connected to NLM researchers, developers, information professionals, program managers, and product owners, including knowing what information is most important to them and has the greatest impact on their work.

This vision also involves knowing how all segments of NLM’s audiences respond to different types of engagement activities. That knowledge will position OET to use our expertise, capabilities, and connections to bring NLM’s trusted resources to communities when and where those resources are needed most. And, considering our unique position, it means we can be a catalyst for exploring novel, effective ways to connect, build, and enhance opportunities for all audiences to engage with NLM.

But that’s not all.

As we started working toward these goals and aspirations, we asked the BOR for advice and thoughts to guide us. For some activities that we currently engage in, such as surveys, webinars, meetings, and exhibits, the BOR provided encouragement for us to continue. The BOR also challenged OET to explore new strategies for engagement, such as working with U.S. Public Health Service Commissioned Corps officers who are part of the Prevention through Active Community Engagement (PACE), in the Office of the Surgeon General. Another suggestion was to engage in community theater productions to help convey our message.

The possibilities that BOR members provided, as well as input from our colleagues at NLM and other partners, have given OET much to consider as we chart our path forward.

What does this vision of OET mean to you?

I’ve been called corny by one of my colleagues (said with a smile) for my obvious enthusiasm about the future of OET. But I absolutely embrace that sentiment! I’m enthusiastic because I have an opportunity to lead a wonderful team of experienced, knowledgeable colleagues dedicated to our mission. I’m also enthusiastic because OET has the support of NLM leadership and the BOR to continue creating an office that supports NLM’s goals with evidence-based engagement and training, built on collaboration and inclusivity and with an eye to the future.

This is an exciting time, and I look forward to all that we can do together! I invite you to join us along the way.

Photo of Amanda Wilson, Chief of the Office of Engagement and Training.

Amanda J. Wilson is Chief of the NLM Office of Engagement and Training (OET), bringing together general engagement, training, and outreach staff from across NLM to focus on the Library’s presence across the U.S. and internationally. OET is also home to the Environmental Health Information Partnership for NLM and coordinates the National Network of Libraries of Medicine. Wilson first came to NLM when appointed Head, National Network Coordinating Office, in January 2017.