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. 

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.

The Future of Health and Health Care

I want to say one word to you. Just one word.

In the movie The Graduate, Benjamin receives one word, whispered in hushed tones, as guidance to a successful future: “plastics.” Today, the National Library of Medicine, and the NIH as a whole, would whisper “data.”

The future of health and health care rests on data—genomic data, environmental sensor-generated data, electronic health records data, patient-generated data, research collected data.

Why is data worth our attention now? Because data generated in one research project could be analyzed by others and help grow knowledge more quickly.

The data originating from research projects is becoming as important as the answers those research projects are providing. Various kinds of data originate from research, including genomic assays, responses to surveys, and environmental assessments of air quality and temperature. Making sure these data are effectively used in the original study is the responsibility of the investigators. But who will make sure that relevant parts of these very complex and expensive-to-generate data will remain available for use by other investigators? And maybe even more important, who will pay for making those data discoverable, secure, available, and actionable?

We believe the NLM must play a key role in preserving data generated in the course of research, whether conducted by professional scientists or citizen scientists. We know how to purposefully create collections of information and organize them for viewing and use by the public. We can extend this skill set to the curation of research data. We also have the utilities in place to protect the data by making sure only those individuals with permission to access data can actually do so.

We have much to learn along the way, for handling data is not straightforward, and the analytical methods that help us best learn from data await future development, but we have the foundation on which to build, the knowledge to get us going, and the tradition of service-inspired research that enables us to learn as we go.

Over the next few months I will outline NLM’s plan to become what the ACD report recommended—the “epicenter of data science for the NIH.” I look forward to your comments.