Walk with Me While I Walk with Those Who Walked for Freedom

Those bold enough to confront challenges bring change.

Throughout February, in commemoration of Black History Month, the National Library of Medicine and the NIH Office of Equity, Diversity, and Inclusion (EDI) join together to celebrate and honor the legacy of Dr. Martin Luther King, Jr. and the civil rights movement with a poster exhibition in the lobby of the Lister Hill Center.

A few weeks ago, I had the privilege of touring this exhibition with Ms. Debra Chew, Director of NIH EDI, and Mr. Danny Dickerson, Director of EDI’s Diversity and Inclusion Division. We talked about the power of citizens to affect change and observed how far we have come—and how far we have yet to go—toward true equality. But we also took time to quietly take in the exhibit.

I was struck immediately by how young everyone looked in the photos—and in fact, they were. Julian Bond was only in his mid-20s but already a skilled activist, and Shirley Chisholm was not quite 40, still a few years shy of being the first African-American woman elected to Congress. The images of the Reverend Martin Luther King, Jr. were the most striking to me—odd because his face is so familiar. But in these images I particularly noticed his eyes. At one and the same time they were lighthearted and welcoming, fierce and wise.

As a teenager in the 1960s and as the NLM Director today, I felt Dr. King’s call to act and to serve, with the slight warning that, while both could be fulfilling, both would be fraught with challenge.

But history has shown that those bold enough to confront challenges bring change.

Image collage
Photo collage of civil rights icons Rosa Parks, Thurgood Marshall, Dr. Martin Luther King, Jr., Jackie Robinson, Shirley Chisholm, and Julian Bond.

The inspiration and hard work of the civil rights movement shaped health care in so many ways. We recognized that separate care is not equal care, and that those who experience the chronic stress of poor housing, limited schooling, and societal bias (increasingly subtle but sadly still present) have special needs. The medical literature is more complete now than it was 50 years ago, with greater attention to the experience of health by those whose race and ethnicity differ from what we once called “the majority.” NLM’s Specialized Information Services Division uses in-person and web-based strategies to make health information not simply available, but also accessible to those who hold different cultural values and have different life experiences. And our History of Medicine Division guides us to preserve not only typical images of health, such as anatomy drawings, but also the unexpected—images like the one above showing members of the Medical Committee for Civil Rights as they participate in the 1963 March on Washington for Jobs and Freedom.

Do images inspire you to think about health?

Then take a look at some of the over 70,000 images available through our History of Medicine collection and see what awaits.

And if you’re nearby, I encourage you to come to the National Library of Medicine, NIH Building 38a (Lister Hill Center), to walk through our brief history of the civil rights movement and to consider the brave men and women who stepped forward to ensure that all people share equal rights.

The exhibition is open through February 28 from 8:30 am to 4:00 pm weekdays, except federal holidays.

For more information about the exhibition, please contact Melanie Modlin, Deputy Director, Office of Communications and Public Liaison, National Library of Medicine at 301.496.7771.

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.