Who’s Out There?

I write this blog for a number of reasons.

Sharing my ideas helps me clarify my thoughts. It helps me plant a seed to advance an idea or enlist your support. It also gives me the opportunity to introduce different aspects of the National Library of Medicine and its vast array of services.

And obviously, I write each post intending it to be read, but who exactly are my readers?

A coach once told me that, before I start any writing project, I must envision my readers. Here are the readers I envision right now:

Some of you are stakeholders of the Library and its products and services—researchers, clinicians, librarians, patrons, policy makers, and NLM staff members. Many of you have already shared your ideas, stimulated by some of my writings; I encourage more of you to do so!

Other readers are my loyal friends and professional colleagues who want to know what I’m up to in this phase of my life. These folks are more likely to tell me privately they’ve read the blog or they look forward to the next installment.

Still others find their way here through the power of connections and the exhortation to “read this.” That is, they might get a link to the blog post from someone who found an idea to be interesting, provocative, or maybe even wrong.

Wrong? Could there be someone who takes issue with or maybe even disagrees with a perspective I have advanced?

Of course. Probably a few someones.

I recognize that people may (and likely do) hold different perspectives on some of the ideas I’ve already advanced, such as providing information to people on the move or the sly bemusement I expressed regarding the Cold-War origins of the building. Sometimes I even hear from them. That’s why there’s space here for readers to talk back.

Bring it on, I say!

Because ultimately, the reason I write this blog is to engage with you.

What’s on your mind? You have the floor.

We’re Witnessing a Health Data Explosion

How can the world’s largest medical library harness data to improve public health?

Guest post by Dana Casciotti, PhD, Public Health Policy Analyst

You don’t have to be a scientist or health professional to know that information is at the heart of every biomedical advancement and clinical decision. And it’s equally obvious that authoritative health information does not appear out of the blue. Medical knowledge emerges from a process that begins with basic research into how organisms work and ends with carefully tested determinations of what treatments work best for the symptoms, disorders, and diseases humans face.

Along this bench-to-bedside continuum from discovery to practice is the work of the National Library of Medicine. Since its creation, NLM has been committed to making its vast store of information available to the public, including lay individuals, communities, medical and public health professionals, and researchers. Our simple but important mission is to acquire, organize, disseminate, and preserve the biomedical knowledge of the world for the benefit of public health.

Let’s face it, though—there are challenges. Information access may be the first step to improving health outcomes, but we know that having access to information alone is not sufficient. Think of all those who continue to smoke cigarettes despite the Surgeon General’s warning about the dangers plainly stated on the package. Or story after story in the news about the benefits of exercise, passively taken in—and ignored—by the couch potato. Certainly other factors—social, behavioral, economic, and environmental—influence whether and to what extent individuals use health information.

Additionally, although the internet and social media have expanded access to health information and built meaningful communities around medical topics, those tools have also spread a disturbing amount of inaccurate information.

So, we have our work cut out.

From a public health perspective, I am interested in how NLM can foster new approaches to interpreting and using information so individuals can have more productive health care interactions and improved health decision-making. Along that bench-to-bedside continuum, I’m focused on the end, on what happens bedside, in the doctor’s office, or at the kitchen table as patients decide what to do.

Close-up of a smart watch on a man's wristThanks to new apps and wearable devices, people can be more aware than ever about their own health data especially related to behaviors like diet, exercise, and sleep. In addition to personally collected information, there is a vast array of health data generated from various sources—Electronic Health Records, research studies, and insurance claims data, just to name a few, along with the newest kid on the block, the NIH Precision Medicine Initiative. Its All of Us program aims to build a national, large-scale research enterprise with one million or more volunteers to extend precision medicine to all diseases. Imagine the size and promise of that data!

So how can the Library capitalize on this data explosion? Can we facilitate data collection and use at the point-of-care in a way that is manageable—and actionable—for busy clinicians and often overwhelmed patients? How can we use health information technology to create links between health data and consumer health information? Can we guide people effectively to sources of actionable information tailored to them? Can we help individuals take greater ownership of and be more active in health decision-making?

These are the questions my colleagues and I are wrestling with now, and the answers will certainly build upon the promise of recent advancements in information science and data science, along with cultural shifts brought about through the open science and citizen science movements. If we can effectively channel the tsunami of personal data being generated by each of us every day, then maybe we can employ new strategies to engage the couch potato and continued smoker. NLM can continue to be the gold standard for information about health and medicine, and make sure the public can find and use us.

If so, we can positively impact health, both for the individual and for society at large.


Guest blogger Dana Casciotti, PhD, is a Public Health Policy Analyst at the National Library of Medicine. Dr. Casciotti has over 10 years of experience in the public health field working in academic, government, and nonprofit sectors. Her training has focused on behavioral and social factors related to health, especially cancer prevention and control, and health communication. Dr. Casciotti holds an MPH from the University of Pittsburgh and a PhD from the Johns Hopkins Bloomberg School of Public Health. 

What Can the Audubon Bird Count Teach Us About Open Science?

Citizen engagement shakes up roles, expands resources

One of the themes we are delving into as part of the strategic planning process is the role of NLM in advancing data science, open science, and biomedical informatics. Today I want to home in on the “open science” part of that theme.

Open science espouses a collaborative, open, engaged approach to all processes of the scientific endeavor. To some it includes open access to journals (with our PubMed Central a flagship example) and open data (accelerated by our ClinicalTrials.gov efforts to make the results of clinical trials available to the general public within a year of trial completion). Open science approaches are emerging in part because the World Wide Web enabled a democratization of information and communication, and in part because scientists realized they can benefit from early and open dialogue about approaches and findings. To me, a novel and important aspect of open science is the engagement of lay people across the continuum of the scientific effort—citizens engaged in science.

Perhaps the best known and oldest citizen science project is the Audubon Bird Count. Begun as an alternative to the holiday hunting traditions, this project engages citizens around the world, in well-structured bird circles, who go to their local woods and neighborhoods to create a wildlife census. Now in its 117th year, the Audubon Bird Count has been spectacularly successful—over 70,000 volunteers worldwide have counted more than 11 million birds, traced migratory patterns, and discovered new locations for some species. This example of citizen science illustrates one way citizens can do what professionals alone cannot—in this case, visit far-reaching places to make observations guided by professional knowledge.

A speckled birdThe Audubon Bird Count shows citizens participating in science as extenders, collecting data far beyond what scientists can do alone. Citizens can also serve as collaborators, working side by side with scientists to help analyze and interpret data. The Foldit portal, for example, engages citizen game players in recognizing patterns and solving puzzles that ultimately crowdsource how proteins fold. And in a very advanced form of citizen science, citizens and scientists co-create knowledge, partnering to pose research questions, set funding priorities, determine analytical approaches, and evaluate evidence.

Open science promises to accelerate knowledge building by complementing (or sometimes disrupting) traditional approaches to discovery with strategies that bring many more perspectives into the research process earlier, and with greater dialogue. With open science, scientists have new roles and gain new resources not available under traditional research models. And when citizens are engaged in the process, society benefits by raising the level of scientific understanding among participants and, by extension, across communities.

For NLM to be more fully involved in open science, our long-standing approaches to research support and scholarly communication must take on new dimensions. What do you think those might be?

If you’d like to share your own examples of open science or your ideas for integrating open science into the Library’s role, comment here or, in keeping with our bird theme, send me a tweet at @NLMdirector. I’d love to hear about them.

Reaching Those on the Move

Health information for the uprooted or displaced

Last month I was privileged to visit the Phillips Collection, the new Smithsonian National Museum of African American History and Culture (NMAAHC), and the White House. (I know, quite a month!) Each place was inspiring, but I found an unexpected thread linking them: the concept of migration.

At the Phillips, I viewed all 60 panels of Jacob Lawrence’s The Migration Series, reunited for a special exhibition. (The Phillips owns all the odd numbered panels in the series, the Museum of Modern Art in New York the even ones.) These colorful block images depict the migration of African Americans from the rural South to the industrial North, showing men and women in the fields, families at train stations, workers in steel mills, and a changing home life.

Later, at the NMAAHC, I traversed 500 years of African American history and culture, from the enslaved Africans to the first African American president. Then just before Christmas I toured the current home of that president. In the Green Room of the White House, I saw another Jacob Lawrence painting, “The Builders.” At the end of the migration, a chance to build a new life!

Busy workmen on an active construction site, painted in browns, reds and blues.
“The Builders.” This painting of a group of men constructing a building was done by Jacob Lawrence in 1947. It hangs in the Green Room of the White House. (The White House Historical Association)

Those art pieces and museum exhibits inspired me to think about an important way NLM serves the health information needs of the public: how we reach people on the move.

We need to provide health information—often specific and potentially unfamiliar—to people when they are not in their usual, stable places, whether they’re traveling, in the hospital, or uprooted due to war or natural disaster. To do that successfully, we need to explore new ways to get our information out.

Our consumer health website, MedlinePlus, is fully responsive. As a result, it’s easy to use whether viewed on a full-sized monitor or a smartphone’s small screen. The full NLM website is responsive as well. But providing dynamic mobile content takes us only part of the way toward serving people on the move.

NLM’s Disaster Information Management Research Center (DIMRC), within our Specialized Information Services Division, travels that road even further. Our staff focus on maintaining access to health information at all phases of disasters and public health emergencies, circumstances which create their own unique challenges for staying connected and staying informed. Most recently, this impressive team set up websites to aid people in the path of Hurricane Matthew and to provide up-to-the minute information on the Corpus Christi water emergency.

On a larger scale, they have developed apps that serve the specific needs of first responders and emergency personnel, folks who are regularly on the move and encountering unexpected, shifting conditions. These apps—WISER, REMM, and CHEMM—help emergency personnel respond to hazardous materials (hazmat) incidents and chemical, biological, radiological, and nuclear events.

But Jacob Lawrence’s images depicting the terror and beauty of people on the move inspire me to do more. How can we build upon our services for emergency personnel? What else can we do to get health information to people on the move? How can we make sure those uprooted or displaced can readily access information and make sense of it despite the strains of being in unfamiliar locations or unstable circumstances?

I invite you to share your thoughts below.

Leading in Transitions

Maintaining continuity in a time of change

Those of you watching the calendar have probably figured out that I’ve been on the job as the NLM Director for just about five months. My past 30 years were spent in academe, and I figured the biggest transition I would be facing was from academic to Federal employee—daunting but doable, I thought!

I had not figured on the difference between my transition from academic to fed and THE TRANSITION, the change brought about when a new president takes over for a sitting president and the reshuffling in the House and Senate that accompanies it. The logistics of a presidential transition are many—with a good percentage actually completed by October—including preparing briefing books for the incoming administration.

This task is more challenging than it might sound. Putting together a briefing book means distilling this $400 million operation down to a 3.5-page summary detailing our goals, staffing, and key actions for the near future. None of this would have been possible for a newbie without the diligence and insights of Betsy Humphreys, our NLM Deputy Director.

Beyond NLM, it seems to me that the NIH and the entire Department of Health and Human Services (DHHS) is experiencing a mixture of business-as-usual, excitement about change, and curiosity about where a new DHHS Secretary and a whole new administration (with 4,000 new political appointees) will take us.

So what is my role in all of this?

My primary job is to ensure adequate resources for the men and women who work here to create and manage our products and services (such as PubMed, the Common Data Elements Repository, the UMLS, PubChem, ClinVAR, TOXNET, etc.), preserve our historical collections, conduct research, and develop new ways to document clinical trials. I also need to be an advocate for the NLM in NIH-wide discussions about how to foster discovery and support clinical practice in a time of uncertain direction. I must be mindful of my own tolerance for ambiguity, being sure to listen to the concerns of staff and colleagues, respond with confidence, and provide reassurance in a realistic manner.

No leadership job comes with a crystal ball, and my personal opinions about how the future will pan out do not serve as a guide for action. What does guide me is the wisdom arising from the strong NLM leadership team, formed prior to my arrival and now pivoting to guide me as I lead the Library not only in anticipating our third century but also in transitioning to a new administration. The NLM enjoys broad respect and acceptance, so I expect our core mission to persist, but frankly, I too am curious about what the future holds.

What do you think this transition will bring us?