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!

Building a 21st Century Archival Collection at the National Library of Medicine

Guest post by Rebecca Warlow and Christie Moffatt, both of the Library’s History of Medicine Division.

Across NLM, strategic planning is underway and many of our colleagues are thinking about what the next century will bring for the Library. Among the many questions in mind is “what is a 21st-century collection?”

In the Images and Archives Section in NLM’s History of Medicine Division we have seen our archival collections, and our profession, grow and evolve over the past few decades as the archival records of individuals, organizations, and other communities in health and medicine are increasingly created and communicated electronically and online.

But there is more to building a 21st century collection than being digital.

Before we dive into what NLM’s archival collections look like in the 21st century, we realize some readers of this blog may be thinking, “NLM has archives?”  Indeed we do.  Our archival collections consist of over 12,000 audio-visual titles, over 150,000 prints and photographs, 18,000 linear feet of archival and manuscript collections, 6.8 terabytes of born digital content, and 5.1 terabytes of web archives that document, among other things, biotechnology; drugs; health policy; public health; and the research of leading biomedical scientists such as Marshall Nirenberg, Joshua Lederberg, and Michael E. DeBakey.

We consider three broad areas relevant to building 21st-century archival collections:

  1.  Acquiring materials that document both the past and current history of medicine and the health sciences;
  2.  Preserving those materials; and
  3.  Providing access to those materials.

These are not new areas of consideration for archivists, but what we acquire and how we preserve it and provide access to it has been rapidly changing, which means our thinking has to change as well.

So what makes a 21st-century collection different from one from just 50 years ago?

Expanded formats

While we continue to collect analog materials, we have expanded the formats and types of records we collect to include born-digital files—everything from email to word processing documents to digital photographs and videos.  NLM, through its web archiving program, also collects online materials such as blogs, government web sites, online news, and others related to topics such as Ebola, Zika, and bioethics.

Long-term access

The addition of born-digital materials brings preservation and access challenges. To understand the scope of these challenges, consider how you would access a file today you had saved on a floppy disk in 1992. You’d need both the right hardware—a computer with a floppy disk reader—and the right software to read the file. Neither is easy to find. To overcome these types of challenges, archivists are collaborating with IT professionals and others on ways to preserve born-digital content so it will be accessible for decades or even centuries from now.

Enhanced utility

Until recently, access to archival collections has primarily meant being able to read or view content, but we envision a 21st century collection that offers new forms of access that allows for running queries across many items and collections. Researchers may be looking for the initial occurrence of something, for patterns in how it was applied, for the response to it or impact of it. By providing tools and systems that allow this kind of analysis, we will not only accelerate discovery and glean insights; we will also deepen the collection’s usefulness.

How can we make all this happen?

Building 21st-century archival collections ideally means working with the creators of content to acquire and preserve materials before they disappearWeb and social media content in particular is in a constant state of change and at high risk for loss. We will also need tools and systems that support collecting and managing this content on a large scale, and policies and processes for making this content available to researchers who not only want to dive into individual documents, but also run queries across collections. Interestingly, these issues and others parallel those faced by data scientists, ranging from provenance to stewardship, intellectual control, privacy, and long-term access for both anticipated and unanticipated research needs.

As we collect and preserve these archival materials, we aim make them broadly accessible to researchers, medical professionals, educators, students, and the general public.

We invite you to learn more about the NLM’s archival collections and explore some of our online resources from the History of Medicine Division, including the following:

Rebecca Warlow works in the Images and Archives Section, History of Medicine Division, Library Operations Christie Moffatt works in the Images and Archives Section, History of Medicine Division, Library Operations 

Guest bloggers Rebecca Warlow and Christie Moffatt work in the Images and Archives Section, History of Medicine Division, Library Operations.

Further readings

Embracing the Future as Stewards of the Past, A View from NLM’s History of Medicine Division, Jeffrey S. Reznick, PhD, Chief of the NLM History of Medicine Division

Responding to a Call to Action: Preserving Blogs and Discussion Forums in Science, Medicine, Mathematics, and Technology, post on the Library of Congress’ The Signal by Christie Moffatt

National Digital Stewardship Alliance 2015 National Digital Agenda

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!