Engaging with Purpose: Libraries as Healing Spaces

Over the past month, students across the country started their first day of school—it’s a day of excitement, promise, and the hope of new growth. For some students, including those who were at Robb Elementary School in Uvalde, Texas, it’s a challenging time—how to reach for the future without the pain of the past. Importantly, libraries help!

Libraries know the importance of engaging with their communities, and they know how to do this. Over the summer, El Progreso Memorial Library in Uvalde, Texas, became a center of healing for the community—a place to bring people together in times of sorrow, as well as times of joy. I urge you to watch this news segment about how the El Progreso Memorial Library helped support its community in need and to think about the special role that libraries play in strengthening communities.

Through our Network of the National Library of Medicine (NNLM), NLM supports member libraries’ responses within communities around the country to address their health information needs. Our primary goal for engagement through the NNLM is to open a pathway between the community and NLM to make sure our resources are available, accessible, usable, and relevant to them, and to learn from them how they can best access our resources.

We can’t lift up communities without engaging with them, and we can’t be everything to communities. But by our engagement, we co-define the rules of engagement and show how what we do supports what they need.

The story of the El Progreso Memorial Library’s response to the needs of the Uvalde community inspired me in a way that I had not expected. Many times, the “rules of engagement” begin with a clear delineation of who we are and what our business is, essentially letting us step into a community with what we already know how to do. Suppose we started off at a different place—the place that engages with the community by beginning with the question, “What do you need?”

Now, starting with this question does not require us to be all things to all people—this would be foolhardy and frankly not something that would help us be true to our stewardship of the public’s federal investment. But… by starting with the question—“What do you need?”—perhaps we would organize our resources in ways we have yet to envision that make them even more accessible and responsive for those communities. This effort aligns with the second goal of the NLM Strategic Plan to engage with new people in new ways.

And maybe we would learn new things or more effective ways to reach communities. Libraries have a special space in the panoply of communities—we bring a wide range of resources to a wide range of people. Engaging with openness brings us closer to those who need us to bring those resources to them!

Please look around at the communities you are part of and that you serve. Think of how you reach into those communities and of new ways to ask, “What do you need?” to better understand how to serve them!

When You Stand on the Shoulders of a Giant, What Do You See?

This blog contains my remarks from the 2022 Lindberg-King Lecture and Scientific Symposium: Science, Society, and the Legacy of Donald A.B. Lindberg, M.D., which took place on September 1, 2022. Watch a recording of the event here.

I had the great fortune of becoming the director of the National Library of Medicine immediately following the 30-plus-year tenure of Donald A.B. Lindberg, MD. I am sure that each of you here today treasures your own recollection of Don, maybe from a conversation or a laugh you may have had with this great leader, teacher, visionary, and colleague (and husband to Mary, father, grandfather, and friend). I am both proud and humbled to stand on the shoulders of this giant as I lead this incredible organization.

I know more viscerally than most about Don’s legacy as NLM director. I sit in the office he occupied, I walk the halls he walked, I work with the people he hired, and I see and experience the fruits of his judgement, investments, and vision.

I now sit where Don once sat, representing NLM at the leadership table of NIH with the other Institute and Center directors. With Don paving the way, I have a platform to extend NLM’s thought leadership and technical knowledge to guide NIH’s continued efforts to advance data-driven discovery. The good will and collaborative spirit engendered by Don across NIH opened doors for me and helped me continue his legacy to deliver on the promise of science accelerated by broad access to literature and data.

Don and I share a deep commitment to ensuring that the public benefits from NLM’s efforts to assemble, organize, preserve, and disseminate biomedical knowledge for society. It was his early vision that made MedlinePlus a trusted resource for consumer health information and ensured that the PubMed citation database and the PubMed Central full-text literature repository were open and accessible to everyone, everywhere, with an Internet connection, at any time and place.  

Don’s commitment to the public was also evident in his efforts to educate the next generation of biomedical informatics scholars. Frankly, I believe that of all of the aspects of his job, engagement with trainees was his favorite!

When you stand on the shoulders of a giant, you have a great advantage. The foundation Don built and the relationships he established provided me, the 4th appointed director of NLM, with a playbook right out of the gate. It is not enough to solely rely on his vision to guide our future as Don also inspired innovation; in one of our last conversations, he said to me, “This is your game—make sure you play it well!” In order to do that, I cannot simply stand on the shoulders of a giant; I must also keep my head up and my eyes forward to the future to envision new pathways and find new opportunities to bring forward the riches of NLM to the future benefit of science and society.

I close by inviting all of you to stand on the shoulders of this giant and meld your sights with his, for it is not by holding tight to that which he could see, but by using his vision as a stepping-off point for our own that will serve his legacy.

The Importance of Listening—and Listening More—in Strategic Planning

I have spent much of the last year deeply involved in the creation of the very first NIH Digital Strategy Plan—an effort that requires listening across myriad NIH institutions and our stakeholders to glean what each finds important to our mission of seeking out and applying fundamental health care knowledge. I am proud to serve as co-chair of this effort with Andrea T. Norris, MBA, NIH’s Chief Information Officer and Director of NIH’s Center for Information Technology. Since October 2021, more than 40 staff members from across NIH have been working to develop this plan.

The purpose of the NIH Digital Strategy Plan is to identify 10 to 12 key capabilities needed to support NIH’s intramural research and extramural research program management, administration, and operations. Intramural research is NIH’s internal research program, and extramural research is research and training opportunities funded by NIH at universities, medical centers, and other institutions around the world. This helps create a vision for the future in which agency-wide commitments and institute-specific investments unite to form an information infrastructure vigorous enough to support the largest organization in the world that conducts and funds research.

In terms of information infrastructure, NIH is like other large, complex organizations where individual institute, center, office, and division investments complement enterprise-wide resources. We are creating a roadmap to make sure the organization has a robust, efficient, and secure information platform on which to conduct business. Developing the NIH Digital Strategy Plan is a lot like the parable of the blind men and the elephant, where different people can have different perceptions of the same thing. So how do we build a holistic strategic vision for the information technology capabilities needed for the future of NIH?

Actually, in much the same way as the Rajah in the parable gently nudges the six blind men towards truth: by instructing them to share their own vision on the journey of putting all the parts together!

Well, that’s what our committee has been doing. We’ve held over 25 listening and benchmarking sessions with stakeholders across NIH, as well as government and non-governmental enterprises that share a similar mission. We listened, and we asked questions, and then we listened some more.

Listening takes time, attention, and presence. As co-chairs of this effort, Ms. Norris and I have attended almost every session to convey our commitment, our interest, and our realization that the future of NIH depends strongly on the information technologies needed to support it. We’ve gleaned novel ideas and heard echoes of important themes. We’ve heard where there are areas of consensus and some frank differences. We’ve listened, learned, and discussed what we’ve heard. We’ve also listened for things that may not have been said.

In an enterprise this large, no single team can or should do all the listening. Our committee members also attended many of the sessions, and we used our conversations with them to verify or refine what we heard. Committee members also reached out to stakeholders around the country to hear how they viewed their future and what best practices they followed to make IT investments.

Listening works best when guided by questions, verifying what is being heard, and elaborating when needed. Listening is NOT list-making nor a process of determining which themes are raised more often or which ideas gain resonance. Listening is engagement, deepening one’s understanding of a complex environment by reaching deeply within and without.

In a few months, I’ll report on the results of our efforts to build the inaugural strategic plan for digital strategy at NIH. For now, I’ll continue to listen.

Meet the NLM Investigators: Dr. Demner-Fushman Knows the Answers to Your Questions!

Meet my close colleague, Dr. Dina Demner-Fushman! This brilliant researcher is the face behind what many of you have already accessed on NLM’s websites. Many of you will agree with me when I say that having one PhD is extremely impressive–but would you believe she has TWO?! In addition to her master’s degree, Dr. Demner-Fushman has PhDs in immunology and computer science.

Dr. Demner-Fushman and her team use advanced artificial intelligence (AI), natural language processing, and data mining techniques to answer consumers’ questions about a variety of health topics. Did you know that it was Dr. Demner-Fushman’s research that led to the developmental stages of the indexing initiative that produced the current iteration of the MEDLINE resource? This work helps all of us navigate a plethora of NLM resources.

Check out the infographic below to learn more about the innovative, important research happening in Dr. Demner-Fushman’s lab.

Infographic titled: Biomedical Question Answering. The title area features a picture of Dr. Demner-Fushman along with her title and accreditations (MD, Phd): Investigator, Computational Health. The first column of the graphic explores her short and long-term goals  for her projects. The center column describes the processes she uses to achieve these goals, and the last column depicts a simple graphic illustrating a Q and A service.

What makes your team unique? Tell us more about the people working in your lab.   

It is a diverse, multicultural team. Some were even born after I got my first IT job checking computers at Hunter College for Y2K compliance. The team is united by the task of enabling computers to understand health-related information needs and the socioeconomic and professional status of people who come to NLM seeking information. It is a group of exceptionally dedicated and talented people. Our diverse backgrounds make us see all possible aspects of addressing the informational and emotional needs of our users. 

What is your advice for young scientists or people interested in pursuing a career in research?  

  • Be proactive: Seek information and take advantage of training opportunities.  
  • Be brave: Admit you don’t know or don’t understand something. Most people will try to help.  
  • Be bold: Reach out to people who you would like to work with or to discuss your ideas.  
  • Be honest.  
  • Be patient: Research implies working hard, sometimes without immediate results. Even if research is your passion and fun, sometimes you have to do things that you might not enjoy or you might fear but still have to do, like giving talks or writing paper.

What do you enjoy about working at NLM?  

The community of dedicated people across all divisions, the mission, and the intellectual freedom.  

Where are you planning to travel to this year?  

I was just in Dublin, Ireland, in May for the 60th meeting of the Association for Computational Linguistics and co-chaired the BioNLP workshop for the 15th time. I loved Dublin when I visited shortly before the pandemic. I enjoyed revisiting a place I loved and discovering new things to love.

What are you reading right now?  

In the Garden of Beasts by Erik Larson. It provides an amazing view of pre-World War II Germany and political relations. I hope some lessons have been learned! 

You’ve read her words, now hear them for yourself. Follow our NLM YouTube page for more exciting content from the NLM staff that make it all possible. If you’d like to learn more about our Intramural Research Program (IRP), view job opportunities, and explore research highlights, I invite you to explore our recently redesigned NLM IRP webpage.

Transcript [Demner-Fushman]*: When people need information, what they really like is to ask a question and get a really good comprehensive answer, and to also know that the answer is true and correct.

When I started my independent clinician career, I had lots of questions, but I was sometimes not even sure if I was getting the right answer. “Question answering” is this system to understand the question, what the question is about, and why it is asked. When the answer is found, it’s usually not a single answer: It’s parts of the answer in different places. It’s multiple answers. So, all of that then needs to be condensed into one comprehensive answer with evidence of where the answer came from. So that’s the focus of my research.

On the surface, very similar questions asked by clinicians and by the public should be answered very differently. Different deep-learning systems are needed to find the answers to the same question asked by two different people.

The long-term goal is one entry point to all the NLM resources. It doesn’t matter who the person is and how they ask their question or look for information. We should be able to recognize what the person needs and provide it. There is no one—other than NLM—who is specifically dedicated to biomedical information retrieval and biomedical question answering. Although it seems industry is doing that kind of research as well, it is not their main focus, whereas we keep people focused on what really matters for health and advancing medicine.

*Transcript edited for clarity

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!

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