The More AMIA Changes, the More It Stays the Same . . .

Right at this very moment, the American Medical Informatics Association (AMIA) 2022 Annual Symposium is underway in Washington, D.C., and we encourage you to visit NLM @ AMIA 2022 for updates on NLM’s products and programs. Now this may sound quite familiar to those of you who have attended AMIA annual symposiums in Washington, D.C., and other major cities over the past 30 years, but this year it is different. And yet, it is the same.

What’s the same? Well, for me and almost 3,000 other attendees, AMIA is our professional home. Through meetings and conversations, journal articles and webinars, and a host of new events and meetings, members build their knowledge about biomedical and health informatics, share that knowledge with colleagues, and advance the health of the public through informatics. We have built friendships, watched babies be born and grow into adults (including my son Conor), and grieved the loss of great leaders in the field. Colleagues have debated the wisdom of electronic health records that may have inadvertently contributed to clinician burnout and expanded the scope of our design and deployment efforts to encompass tools useful to consumers and language reflective of the diversity of society.

AMIA has welcomed young people into informatics and sponsored high school-student participation in national meetings. Special events now include rapid response to public health threats, special interest meetings for women in informatics, and expanded attention to diversity and inclusion. The fall symposium provides an opportunity for formal and informal mentoring, a quick hug with an old friend, and a reunion of those with whom we studied the basics of the field.

And yet, over 30 years, many things have changed! First and foremost, AMIA as an organization has grown, engaged new leadership, and developed new special interest groups. These each change the tenor of the meeting by adding new events to an already rich and attractive suite of offerings and bringing like-minded people together. The ideas shared and the research reported through the annual symposium have morphed throughout the years; now artificial intelligence takes center stage, tempered by thoughts of transparency and equity. A larger number of panels and industry sessions reflect the rapidly changing landscape of informatics. Electronic posters and smartphone apps take the place of what once were paper posters displayed in long corridors of bulletin boards and a three-inch-thick compilation—dare I say phone book size—of all the papers to be presented at the sessions.

And of course, the pandemic changed both everything and nothing. AMIA still hosted an annual symposium and participants still gathered, at least over video chat! Throughout the pandemic, AMIA offered virtual and hybrid conferences—this is the first annual symposium completely in person since 2019 and boy, was I ready for it!

So, rejoice with us—our annual touchstone of gathering for the science of biomedical informatics and the social support of friends and colleagues continued! Please plan to join us in 2023 and see for yourself what it is like!

Is Age Really Just a Number?

Last week I turned 69! Can you believe that??? This is so amazing to me—how could I be THAT OLD?? Two years ago (when I was just 67!), I shared that…

In midlife, I think I’m where I’m supposed to be, because I feel like I’m 39, think I look like I’m 49, believe I have a career worthy of someone who’s 59, and am approaching the wisdom of someone who’s 69.

So now that I am 69, I still believe all those things are true—particularly the wisdom part. I am wiser about the speed of change, the value of tempering my vision with a dose of realism, and the importance of understanding people clearly. I still feel youthful, look pretty good for a woman my age, and remain proud of my career.

But suppose I want to pick the number that really represents my age. Age is a very important descriptor of patients and research participants. Across all types of clinical research, one of the most common variables collected is a participant’s age. Age is an important indicator of many things human, from physical capabilities that determine their likely response to a treatment, to potential behavioral or mental health challenges. Knowing participants’ ages helps guide the interpretation of research results, allowing scientists and clinicians to determine the relevance of those results to specific groups of people or to better understand the clinical manifestation of a disease. And knowing the age of a participant provides evidence that our NIH studies appropriately engage people across their lifespan.

You might be surprised to know that there are many ways to represent age. For most of us, age is estimated by counting the number of years since our birth. However, for babies, it may be more important to know the number of days, weeks, or months since birth. Some studies compute age as the difference between the date of birth and the date that the data are collected. In fact, in the PhenX Toolkit, a web-based catalogue of expert-provided recommended measurement protocols, there are almost 200 different ways to measure age in a research study. Sometimes information about age is acquired through self-report of the participant, and other times the information is obtained from some existing document like a patient’s clinical record. The PhenX Toolkit is an enumeration of a wide range of measurement approaches and allows for broad coverage in a way that lets a researcher pick the measure that best represents the phenomena of interest to their study.

Over the past decade, NLM has supported the creation, identification, and distribution of Common Data Elements (CDEs). CDEs are specialized ways to measure concepts common to two or more research projects in a manner that is consistent across studies. Using a similar approach to measures similar concepts sounds like a no-brainer, right? It improves the rigor and reproducibility of research and allows data collected in different studies to be grouped together, adding power to the interpretation of research efforts. The COVID-19 pandemic illustrated the value of the common approaches to measuring research concepts by allowing us to track this deadly virus and its manifestations across time and people.

NLM established the NIH CDE Repository to serve as a one-stop location for research programs and for NIH Institutes and Centers to house CDEs and make them available to other researchers. Each record includes the definition of the variable as an indicator of the concept, a way to measure the variable (usually a question-and-answer pair with acceptable responses), and machine-readable codes where possible. Recently, the NIH CDE Repository began supporting an NIH governance process that indicates which of the proposed CDEs that have been received are described with sufficient rigor to be designated as NIH-endorsed. This endorsement helps potential users who are seeking good ways to measure complex concepts. NIH-endorsed CDEs support FAIR (findable, accessible, interoperable, and reusable) data sharing. Adherence to FAIR principles provides high-quality, “computation-ready” data with standardized vocabularies and readable metadata retrievable by identifiers that modernize the NIH data ecosystem. When data are collected consistently across studies using CDEs, it’s possible to integrate data from multiple studies, which can make it easier to get meaningful results. CDEs can also make it easier to reuse data for future research by improving the data quality.

So if I wanted to be “counted” according to the years-alive mode of assessing age, I guess I am 69. But if you really want to know something else, like how happy I am in my career or how I’m feeling, don’t be surprised if I give a different number!

How Being an ICU Nurse Prepared Me to be NLM Director

In mid-May, at their 2022 National Teaching Institute & Critical Care Exposition in Houston, Texas, I received a great honor from the American Association of Critical Care Nurses (AACN): the AACN Pioneering Spirit Award. I was delighted to receive this prestigious award, which recognizes significant contributions that influence progressive and critical care nursing worldwide and relate to AACN’s values of integrity, inclusion, transformation, leadership, and relationships. I was humbled to receive this award for my work during my tenure as NLM Director, and it’s in large part due to the work that so many NLM employees do every day.

This acknowledgement from AACN is deeply meaningful to me because critical care nursing has been a part of my professional identity for almost 50 years! In 1974, while I was still in nursing school, I was assigned to work as a nursing assistant in the critical care medical unit at Lankenau Medical Center outside Philadelphia. After graduating in 1975, I became part of the nursing team in the surgical intensive care unit (ICU) at the very same hospital.

These early experiences have touched every part of my career, including my role at NLM—the epicenter for biomedical informatics and computational health data science research and the largest biomedical library in the world.

Then: Learning from My Teachers and Colleagues

I learned from Kathy McCauley, cardiac-care nurse extraordinaire, about the importance of the scientific basis of nursing. Nurses’ deep knowledge of physiology, pharmacology, and anatomy enables the bedside critical care nurse to almost instantaneously recognize vital changes in a patient’s medical status and determine just the right interventions to rebalance fluid or improve oxygenation. My colleague and ICU nurse, Nora Kelly, modeled respect for patient dignity that, to this day, shapes my work to support patient self-management using effective computer technologies. Nora showed me that even in the midst of an often hectic, fast-paced ICU environment, there was always time to provide a patient with comfort, help a person into a more comfortable position, or complete basic hygiene and grooming around tubes and monitor wires.

Now: Serving as Your NLM Director

What stands out the most to me now are the lessons about the importance of in-the-moment information processing; interdisciplinary teamwork supported by nurses, physicians, respiratory therapists, pharmacists, social workers, and others; and personal accountability that shape my everyday life as the director of NLM. Delivering high-quality care under extreme levels of uncertainty and risk is the hallmark of critical care. I learned early on that time was of the essence—there was rarely an opportunity to pause and read an article or two as one pondered how to intervene in a physiology cascade that could lead to sudden death.

The insights from these experiences taught me that for information to truly support in-the-moment care, NLM needed to make its resources open and available in machine-readable formats. It is our job to use machine-learning algorithms to make available NLM’s vast repository of biomedical and scientific literature that drives contemporary drug management or clinical guidelines interpretation. NLM invests in research that helps ICU professionals quickly interpret patient charts so they can predict the likelihood of pulmonary embolism diagnosis or track a patient’s probable health outcome trajectory using observations noted in their electronic health record.

NLM in the ICU

ICU patients in hospitals around the country are all supported by the best interprofessional teams that understand the unique aspects of patient care, whether that’s to advance the patient’s progress towards wellness or to provide alternative end-of-life care focused entirely on comfort. Because of the diversity of caregivers and professionals across hospital ICUs, we must acquire, organize, and disseminate the literature to all biomedical professional groups when they need it most.

It is in this spirit that each division in NLM—including our Library Operations team managing our NLM Collection, our MEDLINE Literature Selection Technical Review Committee to impanel experts across many specializations, and our PubMed and PubMed Central with the tools to index and catalog records—accelerates the dissemination of knowledge from many disciplines. Clinicians are required to have deep expertise and stay abreast of new research within their specialty and to recognize potentially valuable literature from other disciplines. In support of this requirement, we organize over 34 million citations by clinical problem and physiological underpinning. That way, no matter what your specialty, each search identifies literature from a wide range of perspectives and refines our “relevance-based results return” according to those patterns most valued by our patrons, as described by NLM’s Best Match algorithm.

Patients often find themselves in the ICU from somewhere else in the health care system and are frequently discharged not to their homes, but to other less-intensive clinical care units. To understand their conditions and efficiently guide their care in a vast, complex, and time-sensitive setting, health care interprofessional teams should understand all ICU clinical information and events so they can translate and transmit that information to the responsible post-discharge teams. This information flow relies on health data standards so that events that occur in one place are well understood in the next. NLM plays an important role by forecasting how health care settings like ICUs will use health data standards to promote interoperability and by shaping the public policies that protect patient records. NLM shares its expertise in data science, health information technologies, and computer science with our fellow federal agencies and with the private sector to make sure patient records are accessible while remaining private and secure.

Connecting the Dots

I remember the enormous intimacy involved in my ICU nursing experience, often including myself and a patient, at times the patient’s family, and certainly every time the rest of the care team. But teamwork only works when each member holds sacred their responsibility to the patient and the care that they require. Personal accountability does not occur in a vacuum; rather, it is molded and shaped through conversations with colleagues, collaborative care-planning rounds, candid postmortem reviews, and quiet heart-to-hearts in the staff lounge. Even these efforts are touched by NLM, from providing literature and guidelines that lay out the various roles of professionals to furnishing our citations repository with the contact information of those authors whose work guides clinical thinking. In this way, NLM becomes a partner for personal accountability.

If only that fledgling ICU nurse from 50 years ago knew that her entire cultural and practical experience was preparing her to direct the most important health science library in the world! Because of who she was as that nurse and who we are as NLM, critical care remains a cornerstone of health care information and systems in best support of all patients. If you have ideas for how NLM can better support the critical care of YOUR patients, please let us know!

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!

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