It IS your father’s Big Data–and your mother’s, and your sibling’s, and even yours!

Let’s make it useful to them.

You’ve probably been hearing about big data everywhere—traffic patterns, video streams, genome sequences—and how it is changing lives, accelerating commerce, and even improving health. But most of the time the conversation focuses on what business professionals and scientists might need, want, or do with big data. It’s time to consider how the ordinary person can benefit from this data revolution.

But first, what exactly is big data and why should you (and your father, mother, siblings, and friends) care about it?

The term “big data” can be used to describe data with a range of characteristics. It covers high volume data (like the whole human genome) or data that streams at a high velocity (like the constant flow of image data from space exploring satellites). It also includes high variety data (such as the mix of chemical process, electrical potential, and blood flow observed during brain studies) that may have high levels of variability (like around-the-clock monitoring of traffic flows through busy highways). Ultimately, a key to big data is its high value, whether that’s important to commerce or to the discovery of new cancer drugs. Scientists are learning how to make discoveries through data, and businesses are learning to leverage big data to glean key customer insights.

But big data can be and is of value to the everyday person as well. It already helps us navigate through a new city using map and traffic apps and to find interesting information through search engines, among other things.

Here at the NLM we want find ways to help people use big data to help manage health and health concerns. It may help them know what to do in an emergency, to better understand their family risks for heart disease, or to learn just how much exercise might ward off Alzheimer’s disease.

Toward that end, we are funding a grant award, Data Science Research: Personal Health Libraries for Consumers and Patients (R01) (PAR-17-159).

We’re looking for researchers who want to partner with lay people to discover how to bring the power of big data into their lives. To do that, we need fresh approaches to biomedical informatics and data science, shaped to meet the needs of consumers and patients, whose health literacy, language skills, technical sophistication, education, and cultural traditions affect how they find, understand, and use personal health information. Novel data science approaches are needed to help individuals at every step, from harvesting to storing to using data and information in a personal health library.

If you’re a researcher interested in discovering new biomedical informatics knowledge to help consumers and patients make use of big data, this opportunity is for YOU! If you’re a clinician or a librarian, reach out to your science colleagues to form a partnership. If you’re a patient, find a researcher at your local university and invite yourself into the process of citizen science.

Much of the data behind the big data revolution originates from everyday people. Many of the benefits of the big data revolution could help improve the lives of everyday people.  In other words, it is your father’s, mother’s, siblings’, and friends’ big data—let’s make it useful to them!

A Strategy for Strategic Planning

Focusing on the reach

I’ve noted before that NLM has launched a year-long strategic planning process.

Well, we’re in the thick of things now.

We’re hearing from and reaching out to researchers, clinicians, librarians, teachers, first responders, and myriad other stakeholders (including you!), from all over the world.

Hundreds of people from scientific communities to our own staff submitted comments regarding NLM’s priorities and future directions. More than 500 people who work at NLM attended a town hall meeting. We’ve visited three of the universities that host our biomedical informatics research training programs (and plan to visit all of them over the next 18 months). We’ve launched several functional audits, which include an examination of our level of investment in outreach and how best to use the Medical Subject Headings to tag the scientific literature.

Then last week we hosted the first of four stakeholder panels. Each of these panels comprises 15-20 experts in biomedical research, medical informatics, library science, and consumer health. The first panel explored—and will continue exploring—how NLM can accelerate basic biomedical and translational sciences.

Led by Art Levine, Dean of Medicine at the University of Pittsburgh, and guided by our Board of Regents’ strategic planning co-chairs Dan Masys and Jill Taylor, this group is considering:

  • the evolving role of NLM in support of global biomedical research;
  • how to accommodate the explosive growth of research data in the life sciences;
  • providing access to the research data sets underlying publications, to support reproducibility, meta-analysis, and optimal return on public investment in science;
  • NLM’s relationship to other NIH Institutes and Centers, including the Library’s role in the Precision Medicine Initiative and other large-scale prospective cohort projects;
  • collaborations with extramural organizations to move science forward; and
  • future directions of key data resources.

And that’s just one of the panels!

Obviously, this is a big task, so here’s where our strategy comes in.

Often people get concerned that if something doesn’t appear in the strategic plan, it will be lost, but that is not the case here. NLM’s core mission remains strong and vibrant. We’re being ambitious and asking these panels to focus on big gains, audacious goals, the reach-beyond-the-reach that will make NLM an even better platform for discovery. That way, the precious time spent together can focus more on that reach than on reassurance.

So what’s in our core mission?

Our core mission remains
central to who we are.

Looking back to our authorizing legislation, we are charged “to assist the advancement of medical and related sciences and to aid the dissemination and exchange of scientific and other information important to the progress of medicine and to the public health.”

This means that we’ll continue producing PubMed, PubChem, dbGaP, ClinVar, and all the databases used by over 4 million users a day. We’ll continue sponsoring research and training, and we’ll continue outreach so that everyone, everywhere, can use our resources. We’ll continue supporting the application of terminology and messaging standards to ensure the interoperability of health data. And we’ll continue vigorously advocating for knowledge management across the NIH.

Our core mission remains central to who we are.

Our strategy is moving us beyond our core mission to figure out what only NLM can and should do to accelerate the progress of medicine and public health.

Get ready for great visions!

Think You’re Seeing Double?

The astute among you (or the inveterate blog watchers) caught me blogging on a new outlet last week: DataScience@NIH. You’re not seeing double, and I haven’t abandoned NLM Musings from the Mezzanine.

In January, 2017 I assumed the role of the NIH Interim Associate Director for Data Science (iADDS), as Dr. Phil Bourne stepped down from his position as the inaugural Associate Director for Data Science.

I now have two distinct but related roles: iADDS and the Director of NLM. As the iADDS, I have responsibilities to the whole of NIH to work with my fellow institute and center directors to guide NIH’s future investments in data science. As the NLM Director I must lead the Library in its day-to-day operations and the creation of its new strategic plan.

The two jobs are a natural pairing.

The challenges of big data—its size, variability, and accessibility—align with the strengths of the library. In fact, recognizing how big data’s technical complexity leveraged NLM’s core strengths, the Advisory Committee to the NIH Director recommended making NLM the intellectual hub for data science in June 2015. They wrote, “NLM is now poised to build on its activities in computational-based research, data dissemination, and training to assume the NIH leadership role in data science.”

My taking on the iADDS role is one step toward making that recommendation a reality. Fortunately I am guided by an outstanding NLM leadership team (I’ll introduce you to them later), and terrific colleagues across the NIH, particularly those in the Scientific Data Council.

It’s an exciting time and having a view from above (iADDS) and a view from within (Director, NLM) helps me see both the challenges and the pathways to resolution. I’ll keep these two blogs going but sometimes point back and forth, so that you can see where my thoughts are going.

I welcome your thoughts. How should the NLM help NIH meet the challenges of data science? What is the role of the NLM in ensuring that data are FAIR (Findable, Accessible, Interoperable, and Reusable)? And most importantly, how do we accelerate discovery through data? The NLM needs your questions and your ideas!

Photo credit: Doug Racine, US Fish & Wildlife Service [Flickr]

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.