Pandemic Decision Fatigue: How Can We Help?

As we enter the third year of the COVID-19 pandemic, I cannot help but be acutely aware of the challenges faced by our frontline workers, from nurses and physicians to grocery store workers and public safety personnel, to teachers, bus drivers, and childcare workers, not to mention the parents of school aged and small children. Despite the recent reduction in case rates for the most recent SARS-CoV-2 variant, hospitalizations remain high, and death is still a familiar consequence to the COVID-19 infection. Clinicians continue to deal with shifting priorities and experience the futility of care more often than ever. Decisions for self-care during the pandemic come frequently supported with guidance that changes over time and may result in confusion and questions – When to mask? How long to quarantine? Boosters? When? What to say to the person in the grocery line who is wearing her mask on her chin?

At the NIH, the rapid pace of work persists. Like others in workplaces around the country, we must keep our base operations moving while working at breakneck speed to deploy new research practices, make available the data and literature needed to understand this complex infectious disease, and estimate its course.

My personal experience during these two years has been a strange mixture of unusually high work demands, unanticipated complexities in the delivery of routine services, and an odd sense of solitude in working from home. I have been safely protected from exposures to large groups and mass transit. Because of the nature of technology, and the resources of the federal government, we at NLM have been able to effectively work from home as we strive to get information out to scientists and society at the speed of a pandemic. So, because my work life seems so safe and easy compared to those of other nurses and physicians and parents, I often wonder – what can I do to help?

I posed this question to some of my other Institute and Center directors at NIH – who are also wondering how can we best advance science—NIH Turning Discovery into Healthwhile responding to the pandemic with the resources of research and knowledge? It was heartening, and also disheartening, to hear concerns echoed by others.

However, through these conversations, a few themes emerged. NIH takes seriously its responsibility to build public trust and demonstrate the value of public funding. We must strive to be true to our mission, which is to seek fundamental knowledge about the nature and behavior of living systems. We must balance the urgency of the moment with safeguarding and nurturing the progress of science. There is no better example than that afforded by the rapid production of vaccines against the SARS-CoV-2 virus, which emerged from almost two decades of basic science investigation. It’s through initiatives such as the NIH Community Engagement Alliance (CEAL) Against COVID-19 Disparities, efficiently launched in the early days of the pandemic, that led to the deployment of community-sensitive testing strategies and opened the door to community delivery of the very vaccines that resulted from basic work at the NIH.

So, what I can I do to help? It is our job at the NLM to acquire, organize, preserve, and disseminate biomedical knowledge. We need to listen to the voices of the pandemic and to heed the urgent calls for information to guide clinicians and patients. We need to pandemic-ready our resources, so that our policy partnerships and communication pathways produce, in the first weeks of a pandemic, the arrangements that help us unlock the literature related to coronaviruses and make it freely accessible to all. We need to deploy our staff for temporary assignments, whether to help launch the Rapid Acceleration of Diagnostics (RADx) or to envision and design the pathology project within the RECOVER: Researching COVID to Enhance Recovery initiative.

We need to accelerate access to viral sequences to stimulate new types of testing, vaccines, and therapeutics. And we need to promote access to freely available professional literature, like the work of Charlene Dewey and colleagues, to help create a culture that will sustain the clinician workforce during the pandemic.

Yes, I still have a valid nursing license, and I still wonder if I should volunteer to give vaccines or provide relief to staff at a local ER. Frankly, at this point in my life, I think I am better at being the director of NLM—doing as much as I can to help while maintaining our commitment to acquire, collect, disseminate, and preserve the knowledge of biomedicine and health—but who knows what future may bring!

Have you experienced pandemic decision fatigue? How can NLM support you?

Happy Holiday Season!

It’s the holiday season and a time for celebration, reflection, and catching up with family and friends. This year, I am struck by two themes: the celebration of light and darkness, and the time-honored traditions found in special foods and decorations.

For me, a winter aficionado with strong Irish roots, my holidays began with Samhain (pronounced “SAH-win”). Samhain is a Celtic festival that marks the “wintering of the world” – that necessary time of slowing down, becoming quiet, and resting. As I write this blog, millions of people across the globe are celebrating the festival of Diwali. Diwali is a five-day celebration marking the triumph of light over darkness, good over evil, and knowledge over ignorance. Families gather over Diwali in households decorated with vibrant flowers and candles, enjoying sweets in acknowledgement of the year’s bountiful harvest.

This year, Hanukkah began at sundown on November 28 and ended December 6. This eight-day Jewish holiday commemorates the rededication of the temple in Jerusalem as a festival of lights remembering the miracle of the oil lamp that burned for eight days. For those who celebrate Christmas, this is both a secular as well as a religious festival including special prayers and church services, household decorations, sparkling trees, and sweet treats. In many places you might find luminarias, small paper sacks filled with sand that support candles creating beautiful lights along streets and up pathways in many neighborhoods inspired by traditions arising from Central and South America. Kwanzaa celebrates African heritage and identity, beginning the day after Christmas lasting for several days. During Kwanzaa people light candles, eat special foods recognizing the “first fruits” of the harvest, and place special symbols around their homes.

Light plays a leading role in many winter celebrations. During this time of year, at least in the northern hemisphere, light is a cherished resource dispelling the darker days and cold weather inspiring vision and hope. Light serves as a symbol of many things to many people, but to me, light symbolizes goodness and knowledge and has special meaning to the National Library of Medicine. NLM brings knowledge to the world 24/7, and I personally take this time to remember the “light” that NLM brings to the world.

NLM has a bit less to do with food and decorations, but we are filled with books, articles, and artifacts about nutrition and symbolism. We can extend the celebration of food and decorations to NLM. In 2016, NLM’s History of Medicine division launched a special exhibition, “Fire and Freedom: Food & Enslavement in Early America.” This exhibit illustrated the important connection between meals and power dynamics – you can visit the online exhibition here. NLM’s digital collection includes pictures of holiday events across time and around the world – you can look here for a poster urging Americans to Buy Christmas Seals, Fight Tuberculosis and here for a September 1917 list of suggestions from the American Red Cross for Christmas packets for our military personnel at home and abroad.

As you experience the lights and marvel at the foods and decorations of this holiday season, in whatever way you celebrate, please take with you the good wishes of the National Library of Medicine!

The Public Libraries are Opening! The Public Libraries are Opening!

Of all the wonderful signs and sounds heralding a change in the response to the COVID-19 pandemic, none is more welcome than the news that public libraries are reopening. If you, like me, remember spending hot summer afternoons in the cool, air-conditioned library, this mid-summer news may bring a smile to your face. For me, as NLM director, this means that NLM will once again have another pathway to help people all over the country access the resources of NLM from their community library.

As public libraries closed their buildings during the pandemic, library staff continued to serve their communities in innovative ways, including home delivery of library books by bike from the Hinsdale Public Library. The joys of reopening are shared by patrons and staff alike, as illustrated in this photo essay from The New York Times:

Working in libraries “feels like home,” Mishael Gis, 28 [a patron], told me. She was using a computer for taxes and research. The scene felt like a homecoming.

Michael Rios, 45, a librarian for children, has spent the pandemic helping readers remotely. But what he likes is helping kids find the unexpected: “I help people search, physically. That’s the part that speaks to me. So, this is great. Huge.”

NLM has a special relationship with public libraries. Many public libraries are members of our Network of the National Library of Medicine (NNLM) and have access to, through NNLM’s seven Regional Medical Libraries, specialized training and resources that enable patrons to tap into the resources and knowledge base of NLM. As members of the NNLM, staff of those libraries have access to hundreds of courses and learning resources provided at no cost, bringing new knowledge about data science and communicating health information to a wide range of audiences.

Public libraries also provide NLM with a ‘finger on the pulse’ of communities around the nation. This helps us understand what kinds of health information are most valued and how to best deliver it.

NLM’s relationship with public libraries supports NIH and provides a mutually beneficial way to leverage partnerships around the country and bring information and opportunities about NIH research programs into communities. For more than 5 years, our NNLM has partnered with NIH’s All of Us Research Program to provide community-based information about participating in this ambitious effort. All of Us is building a diverse community of more than 1 million participants across the country to help researchers learn more about how genetics, environment, and lifestyles affect individuals’ health, especially those in communities who have historically been excluded from large-scale research programs. During the COVID-19 pandemic, the NNLM also partnered with the NIH Community Engagement Alliance (CEAL) Against COVID-19 Disparities to use community-engaged strategies to reduce the burden of COVID-19 among communities disproportionately affected.

Come celebrate with me! The public libraries are opening! The public libraries are opening!

Preparing for the Best Future We Can Imagine

Last year we published a blog on my birthday . . .  I love my birthday! As I wrote last year  . . . When you grow up in a family of 10 kids, like I did, your birthday is a very special day. I celebrated my birthday last week and spent time with my dear friend, Viki, and took the opportunity to celebrate my life yet lived. 

At this point in my life, I find myself consumed with the awareness of how precious life is and how short it feels. The pandemic aggravated a sense that people are vulnerable, life is fragile, and there’s not much time. This sensation made me feel rather depressed. I’m not quite sure why as it’s been a busy and productive year. 

Over the past year, NLM accomplished so much by helping the NIH build the data infrastructure for genomic discovery to better respond to the COVID-19 pandemic and prepare for future ones; conducting research on the microbiome; and determining whether we could detect the presence of certain viruses, including SARS-CoV-2, through the analysis of wastewater. We funded new research to make it easier to understand health data and supported more than 300 trainees and fellows through our Extramural Programs Division. We learned how to telework and meet virtually. We kept our highly valued products and services open and operational 24 hours, 7 days a week. We onboarded new staff, said goodbye to coworkers who retired or moved on, and mourned the deaths of several colleagues.

Slowly, as we’ve all been emerging from the pandemic shutdown to discover new ways of being, I find my spirits lifting and my eyes looking towards the future with optimism and joy.

Part of this feeling comes from a deep and respectful pride for NLM’s accomplishments over the year, and the role I’ve played in it. Some of it comes from welcoming new children and spouses into my very large family. A lot of it comes from the sense of purposeful living that helped me transform a sense of isolation to an engagement with others to co-create a new future. What I’ve realized is that we never actually know our future, so preparing for the best future we can imagine is probably the smartest strategy.

This year, as I add another digit to the long lists of digits that I’ve already accumulated, I’m preparing for the best future that I can imagine. I’m exercising more, practicing the piano with greater diligence, and spending meaningful time with friends and family. I’m engaging with NLM leadership and staff to envision the future of work and to enhance the inclusivity and diversity of our work environment.

I’ve somehow managed to shake off the sense of gloom and doom and see a future that appears limitless to me—awaiting what I can be bold enough to envision, create, and accomplish. Please join me in celebrating my birthday and stepping into the future.

Keeping Found Things Found . . .

About 15 to 20 years ago, in the early days of browsers and websites, colleagues from the University of Washington, led by William Jones, launched a research project called “Keeping Found Things Found.” They interviewed many people to explore what we now call personal information management. You know what this is – it’s how you keep track of your medications, your child’s vaccination record, and your family’s health history. People are amazing at devising clever ways to hold on to personally meaningful and important information – you might even have yours stored in kitchen cupboards, file cabinets, calendars, and even family bibles!

If there’s one thing that libraries do well it’s keeping found things found and making them findable to others. NLM excels at this. NLM has more than 3 million books and journals in our physical collection, millions of genomic sequences in our data banks, and we maintain electronic access to almost 13,000 journals. We’ve also been devising new ways to make our print collection accessible during the COVID-19 pandemic, when access to the NLM building is limited, and preserve the pathways to electronic journals.

One thing NLM is NOT good at is personal health information management—this just isn’t our specialty. NLM funds research to better support people’s abilities to create personal health libraries, but we don’t store personal health information. NLM’s hallmark is acquiring, preserving, and making available for public use scientific knowledge for health as represented in books, journal articles, and data banks. Under special circumstances, we will create ways to collect and archive public information that supports personal health actions that stem from events ranging from the AIDS crisis to the COVID-19 pandemic.

Sometimes libraries help create public information from personal stories. NLM is doing just that to capture the experiences of federal volunteers who have been helping support HHS’ Administration for Children and Families Office of Refugee Resettlement Unaccompanied Children Program. By partnering with the Office of NIH History & Stetten Museum, we are compiling and making available the personal stories of NIH staff who volunteered for this important initiative.

My family and I have also benefited from programs supported by federal libraries to keep the stories of individual people found. In 2005, my son and I participated in an initiative supported by a nonprofit organization to record, preserve, and share a wide variety of stories told by people just like you and me. To prepare for our interview, my then 11-year-old son, Conor, scanned the suggested questions (which he wouldn’t tell me about ahead of time) and ventured off to the mobile studio. It was an amazing experience.

Each storyteller gets about 45 minutes to speak while a sound engineer records the interview on high-quality audio, which is eventually preserved. Participants are offered the opportunity to have their story archived at the Library of Congress and have a portion of their story broadcast over NPR (National Public Radio). Conor and I agreed to both, so we became a part of the many personal stories of the United States. You can listen to the segment broadcast on NPR here.

I loved this whole experience and treasure the sound of my son’s 11-year-old voice. The variety of questions he asked me was surprising, and it gave us a new chance to document our family history. Yet, figuring out what to do with that CD recording over the ensuing decade has been a challenge to me – it’s moved with me three times and is now lodged between two cookbooks on one of my bookshelves – making me grateful that that I have a library and a URL that is helping keep this important thing found.

There are a lot of good reasons why NLM should NOT be the place where personal information is found – privacy, personal control, and the ever-growing trail of records that characterize health care across the life span. The complex mess of papers, pictures, and small books that most of us use to keep track of personal information aren’t amenable to the services of a library, whose goal is to acquire, preserve and promote access by all to a broad range of information. But there are many stories, records, and other notations about our health that individuals need to keep found across their life span. NLM needs your ideas here – should we fund the development of new apps that manage health information? Should we collaborate with electronic health records system companies to urge them to build personal health information resources for their patients? Is this a place where stimulating the business market could help?

I’m grateful that the Library of Congress committed to storing brief encounters between people telling their life stories, but in order to keep my story found, I had to share it with others.

What can we do to keep things found and accessible only to the individual?

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