The New World Ahead

Each of us is experiencing the world in a whole new way. New work practices, new modes of engaging with family and friends, new worries, and new approaches to practicing healthy habits.

During this time, the lines between the many roles we play in our day-to-day lives may be blurring. I straddle many roles — director of the leading center of research in computational health and the world’s largest biomedical library, manager, mother, engineer, daughter, friend, researcher, nurse. Each one offers different insights on how I’m coping with what is happening now and what lies ahead. And I’d like to believe that every role I play in life informs and enriches the others, helping me better meet the challenges and demands of each of them.

At the forefront for me these days is my role as a nurse and how it has helped me transform the disruption of the pandemic into one of the most meaningful periods of my life and career.

I’ve told you before that nursing is fundamentally the diagnosis and treatment of the human response to disease, disability, and developmental challenges. There are several theoretical frameworks that help nurses diagnose and treat this human response. One that has particular meaning to my life and career is the work of Dorothea Orem, who developed the Self-Care Deficit Theory of Nursing. Her theory asserts that all individuals face self-care challenges, and every individual has some amount of self-care agency, that is, the skill to initiate or perform the health activities needed to maintain life, health, and well-being.

Nursing steps in when there is a discrepancy between what an individual needs to do to be healthy and the ability of that person to engage in the self-care behaviors necessary to be healthy. A key nursing intervention focuses on creating an environment that supports development.

I’ve also shared how I integrate a focus on the environment into my research. My work using virtual reality allows me to design and experiment with environments that encourage health. To Orem, the environment is a powerful tool that, if properly arranged, can support the actions that an individual needs to take in order to live in as healthful a manner as possible.

One of the biggest shifts during this time has been in our relationship with the environment around us, specifically, public spaces, buildings and offices, and other sites of social interaction.

Some of us who can continue working are unable to go to our usual place of work, thus the environment of work merges with the environment of everyday living. This requires acknowledgment and adaption, such as setting aside space in your home that is just for work. Another adjustment involves re-creating, through phone calls, web chats, and other virtual means, the social environment of work. Environments for physical activity and relaxation have been affected, too. No more going to the gym or meeting friends for softball — we’re finding different ways to move our bodies without getting too close to others!

This new environment of living and working alters more than the ways we work and play. It can change family dynamics, induce a sense of comfort or isolation, and scramble the visual cues that keep us on track throughout the day.

Perhaps, like me, you’ve set up a workspace that makes room for meaningful objects, such as a picture of a loved one or a favorite pen. Maybe you’ve transitioned your work to home with a computer, calendar, or whiteboard that keeps you engaged and on task. Certainly, so many of us have had to learn new meanings of the environments we inhabit.

I believe that we will return to working in our workplaces — but we will be shaped and transformed by this period of our lives.

Look around your environment now. What aspects of this place and space will you bring to the next phase of your work? How will you be inspired by the strength and creativity you’re currently drawing on while working in this new environment? I look forward to hearing your thoughts.

NLM Is Open for Business!

Last week, I shared what NLM is doing to aid in the response to COVID-19 while keeping all of our public-facing services available to the scientists, clinicians, patients, and families around the world who use them millions of times a day. This week, I want to give you an insider’s view of how the 1,700 women and men at NLM are making sure that all our services keep functioning at a high level of performance.

In keeping with guidance from the National Institutes of Health (NIH) and the Office of Personnel Management, NLM is encouraging remote work to continue Library operations.

This means that all our NIH and NLM telework-eligible staff are working safely from home. There are certain mission-critical functions that must continue onsite at NIH, and staff working in those capacities — security staff; data center staff; the nurses, physicians, and technicians at the NIH Clinical Center — must still come to the NIH campus. But the rest of us are working from afar. We’re brushing up on our telecommunications skills, Skype-ing through meetings, Webex-ing our conversations with colleagues, and texting and phoning as needed.

NLM, and the entire NIH community, is well prepared to keep our operations going while we’re unable to go to our offices at NIH.

All eligible federal staff have written agreements detailing telework arrangements, including the location of the telework office and related expectations. Most of our arrangements for contract workers include consideration for telework. NLM’s Office of Computer and Communications Systems helped equip our staff with the technology they need to work from remote locations and provided the training and support required to ensure secure communications with NLM servers.

We’re also working hard to stay in touch with all our staff.

We’re holding virtual town hall meetings. More than 1,200 NLM staff members attended our first virtual town hall and nearly 1,000 attended our second virtual town hall. These recordings are available for staff who are not able to join us “live.” This is important, as we strive to offer the greatest amount of flexibility to our staff who are adjusting to new ways of working and scheduling their days.

NLM divisions are holding their own virtual meetings and huddles to keep staff connected and coordinate work efforts so that services across the Library remain available. And we’re providing staff with telework tips and guidance on how to manage the professional and personal challenges of working remotely.

I’m proud to say that we haven’t missed a beat!

We’re still adding new citations to PubMed and expanding access to machine-readable full-text articles in PubMed Central, which serves as the repository for articles covered by the NIH Public Access Policy. Our researchers continue to pursue important questions in computational biology and image analysis. And we’re helping both intramural and extramural investigators register trials on ClinicalTrials.gov, including these clinical studies related to the coronavirus disease.

Some things have changed, though. Here’s what my day looks like now.  

Photo of Dr. Brennan's telework space
Dr. Brennan’s telework space

I get up a little later than I used to (since my commute is now very short!) and am ready for work by 8 a.m. Although I have a study in the second bedroom of my apartment, I’ve found that I like working by the front windows. My laptop has a camera, and I have many pairs of earbuds — which is a good thing, because I spend most of the day on videoconferences and phone calls. But I try to get up every hour or so to move about or take a walk around the block (keeping my physical distance!).

While watching the world from my apartment windows, I’m working hard to make sure that our staff have the necessary resources to do their work and that NLM continues to support NIH, scientists, clinicians, and the global community.

Every one of us at NLM, wherever we are, plays an important role in keeping the work of the Library going during these extraordinary times.

So, stay safe, wash your hands often, and keep your social connections active — just at a distance! Let us know how you are managing and, more importantly, how NLM can help you.

How Does a Library Respond to a Global Health Crisis?

Around the world, scientists, public health officials, medical professionals, and others are working to address the coronavirus pandemic.

At NLM, we’ve been working on multiple fronts to improve researchers’ understanding of SARS-CoV-2 (the virus that causes the novel coronavirus) and aid in the response to COVID-19 (the disease caused by the novel coronavirus). By enhancing access to relevant data and information, NLM is demonstrating how libraries can contribute in real time to research and response efforts during this crisis.

Harnessing the Power of PubMed Central® to Enable Data Science Research

With new initiatives launched in the past two weeks, NLM is using PubMed Central®, our digital archive of peer-reviewed biomedical and life sciences journal literature, to expand access to full-text articles related to coronavirus. These activities build on recent requests from the White House Office of Science and Technology Policy (OSTP) and science policy leaders of other nations calling on the global publishing community to make all COVID-19-related research publications and data immediately available to the public in forms that support automated text-mining.  

NLM has stepped up its collaboration with publishers and scholarly societies to increase the number of coronavirus-related journal articles in PMC, along with the available data supporting them. NLM is adapting its standard procedures for depositing articles into PMC to make it easier and faster to submit articles in machine-readable formats. We’re also engaging with journals and publishers that do not participate in PMC but whose publications are within the scope of the Library’s collection. A growing number of publishers and societies are taking advantage of these flexibilities.

Submitted publications are being made available as quickly as possible after publication for discovery in PMC and through the PMC Text Mining Collections for machine analysis,  secondary analysis, and other types of reuse.

This enhanced collection of text-minable content enables AI and machine-learning researchers to develop and apply novel text-mining approaches that can help answer some of the many questions about coronavirus.

Along these lines, NLM and leaders across the technology sector and academia joined OSTP on Monday, March 16 to announce the COVID-19 Open Research Dataset (CORD-19). Hosted by the Allen Institute for AI, CORD-19 is a free and growing resource that was launched with more than 29,000 scholarly articles about COVID-19 and the coronavirus family of viruses.  CORD-19 represents the most extensive machine-readable coronavirus literature collection available for text mining to date. This dataset enables researchers to apply novel AI and machine learning strategies to identify new knowledge to help end the pandemic. Researchers can submit text and data mining tools to be applied to the dataset via the Kaggle platform.

Providing Other Resources

NLM’s efforts to support coronavirus-related research and response efforts are not limited to PMC. Key among the Library’s other important resources are:  

  • NLM’s GenBank Sequence Database — NLM created the Severe acute respiratory syndrome coronavirus 2 data hub, where people can search for, retrieve, and analyze sequences of the virus that have been submitted to GenBank. Our GenBank team is expediting the processing of all SARS-associated coronavirus sequences. Depending on the quality of submitted sequences, they are being annotated and released to the public as fast as 20 minutes after receipt and, in almost all cases, within 24 hours of receipt.
  • NLM’s Sequence Read Archive (SRA) — NLM’s SRA is the world’s largest publicly available repository of unprocessed sequence data which can be mined for previously unrecognized pathogen sequence. For example, a team from Stanford University recently reported that in a search of certain metagenomic datasets in the SRA, they identified a 2019-nCoV-like coronavirus in pangolins (a long-snouted mammal). This type of genetic sequence research can play an important role in understanding how the virus originated and is spreading.

NLM has also made the SRA available through commercial cloud providers participating in the National Institutes of Health’s Science and Technology Research Infrastructure for Discovery, Experimentation, and Sustainability (STRIDES) Initiative. Researchers may now compute across the full SRA dataset for metagenomic research on the new coronavirus in ways not previously possible.

  • NLM Intramural Research Contributions —NLM has a multidisciplinary group of researchers comprised of molecular biologists, biochemists, computer scientists, mathematicians and others working on a variety of problems, including some that relate to SARS-CoV-2/COVID-19. One such project is LitCovid, a resource that tracks COVID-19 specific literature published since the outbreak. This resource builds on NLM research to develop new approaches to locating and indexing the literature related to COVID-19 including a text classification algorithm for screening and ranking relevant documents, topic modeling for suggesting relevant research categories, and information extraction for obtaining geographic location(s) found in the abstract.

NLM is also providing targeted searches within several of its other information resources to help users find data and information relevant to COVID-19. These searches, available through the NLM home page, include information on clinical studies related to COVID-19 listed in ClinicalTrials.gov, and articles related to the SARS-CoV-2/COVID-19 in PubMed, NLM’s database of citations and abstracts to more than 30 million journal articles and online books.

These resources are already proving to be useful to the scientific community and others working together to address this public health threat.

We continue to seek new ways to support these efforts and demonstrate how libraries can best contribute. Please send us your ideas of how NLM can help you respond to the global health crisis or how your library is contributing.

Individual and Organizational Health Literacy: A Key to the Future of Health

As the Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 prepares its new statement for Healthy People 2030, NLM has been asked to review and comment on the definition of health literacy. This request has provided a good opportunity for me to consider how NLM facilitates health literacy — but more about that in a minute.

As a concept, health literacy has generated much attention and debate over the past 15 years. In 2004, the Institute of Medicine (now the National Academies of Sciences, Engineering, and Medicine) released Health Literacy: A Prescription to End Confusion. This report laid the groundwork for the idea that health literacy is more than the capacity of an individual to obtain, process, and understand the basic health information needed to make appropriate health decisions. Health literacy also involves system-level factors such as education, health services, and social and cultural influences.

This idea — of organizational health literacy — encompasses the ways in which services, organizations, and systems make health information and resources available and accessible to people, according to their individual health literacy strengths and limitations.

The white paper Ten Attributes of Health Literate Health Care Organizations proposes that health literate organizations share the following characteristics:

  1. Has leadership that makes health literacy integral to its mission, structure, and operations
  2. Integrates health literacy into planning, evaluation measures, patient safety, and quality improvement
  3. Prepares the workforce to be health literate and monitors progress
  4. Includes populations served in the design, implementation, and evaluation of health information and services
  5. Meets the needs of populations with a range of health literacy skills while avoiding stigmatization
  6. Uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact
  7. Provides easy access to health information and services and navigation assistance
  8. Designs and distributes print, audiovisual, and social media content that is easy to understand and act on
  9. Addresses health literacy in high-risk situations, including care transitions and communications about medicines
  10. Communicates clearly what health plans cover and what individuals will have to pay for services

NLM contributes widely to individual health literacy. We provide information in many forms, from scientific articles in PubMed Central to health and wellness information for patients and their families and friends through MedlinePlus.

But what do we do in support of organizational health literacy?

When it comes to the accessibility of health information and services, we leverage technology to provide a range of machine-accessible pathways to our offerings. For example, our ClinicialTrials.gov application programming interface allows organizations to extract the clinical trials located in an organization’s specific region and display them on the organization’s own portal.

NLM’s MedlinePlus Connect allows health organizations and health information technology providers to link patient portals and electronic health record systems to MedlinePlus, supporting the in-the-moment delivery of personalized health information. We also foster the goals of organizational health literacy through our National Information Center on Health Services Research and Health Care Technology, which provides information on health services research and quality improvement as well as resources for public health professionals.

Please think about how NLM can better support health literacy — either individual or organizational — and share your ideas with me. It’s a key to the future of health!


Envisioning a Future of Better Patient Self-Management

For years, I’ve talked about the “care between the care,” which occurs between patients’ visits to the hospital, clinic, or ER. It’s abundantly clear that the real action is happening in everyday life, yet so much of our clinician education, information technology development, and standards of practice address only that very short time when patients are in the presence of physicians, nurses, pharmacists, or other providers.

We need to devise more interventions that target the care that happens between provider visits.

Like many directors of National Institutes of Health (NIH) Institutes, I have an active research program on the NIH campus. My lab, the Advanced Visualization Branch (AVB), is in the Division of Intramural Research at the National Institute of Nursing Research (NINR). The lab is motivated by one simple question: How can we help people with chronic conditions who are living at home better self-manage?

To address this question, we’re using a whole new set of methodologies involving immersive virtual reality (VR). VR is emerging as a robust research tool that lets investigators create realistic-appearing environments to study human behavior. This approach is particularly important for research on the challenges of self-management at home because the systematic study of behavior requires that we visit the same space repeatedly — something that’s hard to do with people in their homes in real life!

The AVB develops and evaluates augmented reality (AR) and VR experiences that engage participants in multisensory activities and examine their impact on health behaviors. Specifically, we develop interactive VR simulations that present health information to people with a variety of complex health conditions. These simulations provide visual cues that immerse participants in everyday settings.

Research demonstrates that teaching self-management skills is more successful and has a greater impact if those skills are taught in the environment where they will be used. There’s something about visual cues and spatial layouts that seems to reinforce the teaching process and help people develop new patterns.

Simulations that enable people to rehearse problem-solving behaviors in familiar, realistic-appearing environments foster improved health outcomes at home. AR/VR simulations also allow us to experiment with new ways of presenting information that aren’t possible right now but could be in the future.

Photo: University of WisconsinMadison

We could investigate, for example, whether a display of nutrition facts that hovers over a food container leads people to make more appropriate food choices. In addition, we’re developing methods to measure the impact of using AR/VR technology as a tool to aid disease-management nursing strategies during the transition from acute care settings to outpatient environments. Our work will help generate recommendations for how to best use emerging technologies in all types of patient care.  

The cross-disciplinary AVB team comprises staff with expertise in nursing research, informatics, neuropsychology, and digital engineering. The team creates virtual environments to observe, quantify, and assess objective indicators of behavior (e.g., performance, physiological) and subjective perceptions (e.g., mood, user experience, self-rated symptoms) in controlled, complex environments. The results are then used to evaluate individual differences in symptom expression, the delivery of effective health care education, and the utility of VR in engaging patients and improving health-related behaviors.

Photo: Advanced Visualization Branch, NINR

Currently, the AVB’s research focuses on environments for studying the impact of fatigue on everyday activities, evaluating interventions targeting dietary choices by individuals with chronic medical conditions, and helping people better use pillboxes for safe medication management at home.  

While the main focus of my work life is leading NLM, conducting a program of research at NINR enriches my thinking and helps me envision new ways for the Library’s resources to reach people. My research as a nurse-investigator will engender new ideas and help us devise new strategies for delivering the important, consumer-oriented information provided by NLM through our outreach initiatives and MedlinePlus.

Maybe you could help us, too! Researchers interested in the use of technology for patient self-management might consider submitting an application to our Personal Health Libraries for Consumers and Patients grant opportunity.