The Future’s So Bright I Gotta Wear Shades

And that future is all about you!

We’re halfway through the strategic planning process at NLM, with the second of four panels convening last week to explore the future of the public’s health.

Like the other topical panels, invited experts from around the US joined us to share their unique and important perspectives. I am grateful for the opportunity to glimpse the visions of these great leaders, because each meeting gives me new insights and inspires new directions, new possibilities, for the National Library of Medicine.

The topic of public health covered by the panel includes personal health management, clinical care services, and community and public health. We did not separate these in the discussion because people in health or illness pass through each of these care environments as they traverse the trajectory from health to illness and back again.

As our experts shared their visions of what might happen in or across their various sectors over the next 10 years, the message was strong: The future of health lies in the hands of the people who will experience those health journeys. The public’s health, whether experienced in a public health clinic, a hospital bed, or a patient’s home, is going to be increasingly driven by the vision, skill, preferences, and choices of the person, not the professional!

It became immediately clear to me that the library designed to support the intensive care unit in 1995 will be ill-equipped to support a community-situated, patient-centric health care environment in the next decade.

The library that supports acute care rests on several premises:

  • Biological knowledge dominates.
  • Point-of-care decision making is the rule.
  • Records became archives of the care experience.

The future of health lies in the hands of the people who will experience those health journeys.

With a person-driven model, the information needed for care is simultaneously more broad—encompassing social, behavioral, and environmental factors—and more precise—focused on individuals, not the statistical average. We must also reconsider how that information is delivered, so it aligns with the individual’s values regarding heath and health care and is relevant to his or her life experiences and understanding of illness.

So what needs to happen to NLM to make it a library that accelerates personal health, person-centered care, and public health?

We need to collect new kinds of information, such as studies that help us characterize health and illness in terms of the patient. We need to build new filters and integrate special search terms so the process of locating that information aligns with how people experience and understand their own health issues. Finally, we must present that material in a way that is both actionable and comprehensible by the layperson, which might call for translation services or plain language interpretations.

As we design NLM’s future, please let us know what you know. How will care practices and knowledge development in your domain change over the next five years? And how can NLM help you meet those challenges?

Ukuleles and Fishing Poles?

A living library helps you do.

Well, there goes the Wall Street Journal again. Just when we think they’re all about business, they do another feature in support of libraries of the future. This time Lucette Lagnado showcased libraries who lend everything from fishing tackle to musical instruments (subscription required for article).

Is this just a marketing ploy to pull the unsuspecting public into a library, only to have them leave with a fishing pole and a good book? Maybe, but maybe there’s more to it.

Here at the National Library of Medicine we regularly look for ways to help our patrons make better use of our resources. Toward that end, we carry out regular outreach to communities and audiences across the country and across the spectrum, from medical professionals and scientific researchers to students and the general public.

Outreach, by definition, means “to reach further than,” and in conducting outreach, we take this library further into those communities. In turn, the members of those communities are able to go further themselves, to learn more and to do more than they could have without us.

As part of our strategic planning process we are conducting an audit of the many approaches to outreach we employ. We send staff to powwows held by Native American nations and tribes, bringing on-the-spot coaching to attendees to help them find relevant health resources. We create YouTube videos to teach scientists how to effectively use dbGap, our best-known and most highly used database of genetic sequences. Through our National Network of Libraries of Medicine, we attend community meetings and health fairs to ensure people everywhere know about our valuable, authoritative health information. We make informative websites that walk users through the best ways to search PubMed, and we publish a magazine as a free, trusted consumer guide to the latest medical research and quality health information coming out of NIH and NLM.

At first pass, these efforts look like NLM has taken on a health information mission, just like the libraries visited by Ms. Lagnado seem like music rooms.

But look deeper.

What we are actually doing is bringing the library to life—ensuring NLM’s resources are accessible not only in the traditional, well-understood ways of reading and reflection, but by ensuring those accessing our resources have the skills to use them.

After all you can’t catch a fish by reading a book about fishing, and you can’t play the ukulele by simply looking at a musical score. You need to do, and the new “libraries of things” support that.

And when it comes to NLM’s vast resources, we help you do—to effectively find what you need, assess what you find, and apply what you learnto help us all reach further and do more than we did before.

“Rock Star” Librarian—Now That’s a Stereotype I Can Get Behind!

Earlier this month, the Wall Street Journal published a piece by Ellen Gamerman with the headline “The ‘Rock Star’ Librarians Who Choose What Your Kids Read” (subscription required).

The article highlighted how some librarians use social media, including Twitter and blogs, to recommend children’s reading selections—and end up with their own bit of low-level fame along the way.

As many commenters pointed out, this practice does raise some concerns, including adults choosing reading materials for kids, but to me, one message comes through loud and clear: new librarian stereotypes are emerging—and this is GOOD!

Those of you who follow me on Twitter or read a recent interview of me in The Washington Post know that stereotypes of librarians (and nurses) remain and are not always positive. Even when employed good-naturedly, these stereotypes can be unfair or untrue. I’d like to see them go away, but until they do, I suggest we undercut negative stereotypes by cultivating positive ones.

With that in mind, I’m all for the “rock star” librarian idea.

The National Library of Medicine relies on librarians here and in the field—in public libraries, hospital libraries, academic research centers, and K-12 schools. These librarians help people discover and use the quality health information NLM provides to stay healthy, manage illness, and learn about personal or public health issues.

The librarians in the 6,500 or so libraries linked through the National Network of Libraries of Medicine have a presence in almost every county in the United States! They reach out to health professionals and the public in their regions to assess information needs and provide resources. And they do it in ways that work for those audiences—whether via community meetings, webinars, training classes, or face-to-face consultations. These librarians are our rock stars.

What better term to use to describe the 21st century librarian!

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!