Looking Back on 50 Years

Guest post by George Franklin, an information technology specialist in NLM’s Office of Computer and Communications Systems

I started my government career at the National Library of Medicine in July 1967. It was a time of paper, pens and pencils, typewriters—both manual and electric—and plenty of carbon paper. The card catalog that I used many times no longer exists.

A time came when you had to give up your typewriter and carbon paper for this invention called a computer, and that frightened many employees. Then came the world wide web, email, networking, and all this new technology that was supposed to make our life and work better and more efficient. (It keeps getting better or worse, depending on who you talk to.)

My career has been very enriching and exciting. My first job at NLM was in the mail room, where I started as a mail clerk. Currently I am an information technology specialist assigned to the Desktop Services Section of the Office of Computer and Communications Systems. In between, I held five other positions at NLM. Through all seven jobs, plus four years military, I have been fortunate to work with a lot of talented and special colleagues.

I have always had a passion for working with young people of all ages, but I think my greatest achievement has been going out into the community to do outreach, whether at health fairs, school functions (like career days or other special programs), Native American powwows, or professional conferences. I really enjoy talking with people about the important work we do at NLM and at NIH.

It’s that kind of engagement that keeps me going. As a result, fifty years later, I’m still here, enjoying the work I do at NLM and just maybe helping to make a difference.

headshot of George FranklinGeorge Franklin is an information technology specialist in NLM’s Office of Computer and Communications Systems. He will be among the honorees at the HHS Departmental Awards Ceremony Wednesday, May 9, for his years of service.

Photo credit (typewriter, top): Carl Ha [Wikimedia (CC BY-SA 4.0)]

What makes a data commons work?

The data commons is emerging as a key component to support data science and data-driven research.

The term “data commons” can refer to both the technological platform for storing and manipulating shareable data sets and the set of principles, governance strategies, and utilities that make use of those data sets possible.

Over the last five years, the scientific community has grown to embrace the data commons idea much faster than we’ve been able to agree on how to set up, govern, and fund these data commons. As a result, we’re seeing confusion and duplication in certain quarters. For example, we already have several data commons across NIH, including the Cancer Genome Data Commons, and the National Heart Lung and Blood Institute’s data commons, along with several others from the NIH Data Commons Pilot Program.

As you can imagine, many questions remain unresolved. Should there be one gigantic data commons, encompassing all the data in the world? (No.) Should there be country-specific data commons to help ensure they are established with access, use, and storage principles consistent with each country’s laws and regulations? Should funding authorities have the authority to dictate a common location for storing the data? If so, will these authorities then pay for storage in perpetuity? How long should we retain data? And who decides?

Obviously, we’re not going to solve these issues—and the myriad others associated with data storage and access—in a single blog post. But I do want to affirm the National Library of Medicine’s support for the emerging NIH Strategic Plan for Data Science (PDF). NLM is ready to contribute its experience collecting and managing scientific data and literature to the ongoing discussions of how a data commons could be shaped to best support biomedical discovery.

I envision a world where data-driven research is supported by a variety of data commons, enabled by knowable rules of engagement and governed by a set of key principles. Together, these newly-emerging data commons will identify and shape best practices, culled from current data stewards, active data scientists, and the larger public community.

What might these practices be? And what overall makes a data commons work?

Here are a few of my thoughts:

  1. A data commons should provide a safe and secure physical space for housing data.
  2. A data commons should include tools, models, and visualization routines that allow interrogation of the data.
  3. A data commons should make it easy to locate the data stored within it.
  4. No data commons is an island. Each data commons should be designed to support discovering and linking to other relevant data sets, whether those data sets are held internally or located in another data commons.
  5. Contributors to the data commons should be able apply standardized metadata to their data sets.
  6. A data commons should manage permissions and control access so that it maintains the access rules and conditions under which the data were originally collected.
  7. A data commons should handle identity and access management in a way that avoids the challenge of continuous and arduous authentication.
  8. Management issues, such as forecasting the cost of data storage and establishing the time horizon for sunsetting data sets, should be informed  by assessments of the data’s present and future value to society.
  9. All those involved—from data depositors to those who oversee and manage the data commons—should employ the principles of risk trade-offs, balancing the anticipated scientific worth of data sets against the possible loss of valuable data sets.
  10. Effectively managing legacy data sets provides a needed but incomplete perspective on designing the data commons of the future.

Of course, we’ll need many other principles and ideas to design and establish a robust data commons that can accelerate data-driven discovery in the ways we need and imagine. Please share your thoughts. After all, a commons serves as a meeting place for many perspectives and benefits by those in the community actively engaging with those ideas.

Photo credit (top): Modified from Figure 1 in Monnet C, Loux V, Gibrat J-F, Spinnler E, Barbe V, et al. (2010) The Arthrobacter arilaitensis Re117 Genome Sequence Reveals Its Genetic Adaptation to the Surface of Cheese. PLoS ONE 5(11): e15489. doi:10.1371/journal.pone.0015489 (CC BY 2.5)

Quality Data, Quality Findings

Stanford’s John Ioannidis recently joined 71 other methodologists in proposing that we lower the p-value threshold for claiming statistical significance in research from .05 to .005. This proposal is intended to reduce the rate of false positives and improve reproducibility in scientific research.

On the other hand, given the lax, inaccurate, or confusing ways the p-value has been applied, other researchers such as Jonas Ranstam have called for abandoning the p-value entirely in favor of confidence intervals. (A confidence interval is a range of values that provides a pretty good estimate of what the true value actually is—such as the degree to which a medication improves sleep or the likelihood that two samples came from the same genus).

Of course, given the nature of science and scientific research—namely, that we must rely upon sampling because we cannot study every person or every cell—neither the p-value nor confidence intervals can be the perfect arbiter of scientific “truth.” Instead, these figures only help us determine the extent to which scientific results can be generalized beyond the specific group (of people, of cells) tested or experimented upon.

So, p-value or confidence interval—take your pick.

To me, the important issue is how the findings of a research project can direct—with sufficient confidence—the next researcher’s work or the clinician trying to select a therapeutic course.

Ultimately, quality findings require quality data.

That’s why one of the goals of our new strategic plan targets improving the data gathered and analyzed in research studies.

NLM is investing in clinical terminologies to improve how the data collected during research and clinical care are labeled. Properly labeled data not only provide trustable indicators of the phenomena under study; they also allow researchers to more readily combine data from different studies, thus supporting data reuse and expanding the possibility of new findings from that data.

NLM is also investing in strategies to improve data capture and curation, both of which will improve the integrity and precision of data collected during research. Thoughtful, intentional curation and disciplined annotation will also make it easier to locate data sets, increasing the efficiency with which new studies can be designed and implemented.

So pick your side in the debate on the best way to signal significance, but remember that NLM resources are invested at multiple points along the research process, helping to ensure data quality, to simplify its discovery, and to apply analytical tools to uncover the insights the data hold.

The results of NLM’s investments promise to improve our ability to conduct research and interpret its findings, and in turn, those research improvements will be good for science, good for clinical care, and good for health.

Celebrating Libraries and Those Who Make Them Run

It’s National Library Week in the US, the 60th year of celebrating all things library. This year’s theme is “Libraries Lead,” and Misty Copeland, principal dancer at the American Ballet Theatre, is the Honorary Chair.

Sponsored by the American Library Association, this national observance celebrates the role of libraries in our communities, with each day set aside to acknowledge different contributions.

Today, the spotlight is on library workers.

We have 1,700 stellar library workers from a variety of backgrounds, all of whom lend their expertise to advancing the mission of the National Library of Medicine and the National Institutes of Health and to supporting the health and well-being of the public at large. I take this opportunity to thank them for their service, their hard work, and their dedication, and to acknowledge the contributions they make every day to the success of this institution. NLM would not be the special place it is without them.

What makes NLM so special?

Let’s take a look.

L | A library is both a place and a space. NLM’s place, a beautiful mid-century, low-rise building on the NIH campus, was built nearly 60 years ago, and then expanded in 1980 by adding a towering research center. Increasingly, however, we are a space, an abstract location, accessed through the internet, where we meet our patrons and they consult our resources.

I | A library provides information. Our literature services, well-known through MEDLINE and PubMed, form the core of the information our library provides, but we also collect, store, and make data and images available to the world through dbGaP (the Database of Genotypes and Phenotypes), Genbank, NLM Digital Collections, Open-i, and other archives.

B | Of course, our library holds books. Some of those books come from the 10th century, others just arrived yesterday. The NLM collection development plan guides our staff in selecting books, along with other materials, that reflect the state of health and biomedical knowledge. And we don’t just put books on the shelf. We carefully catalog them, make them findable, and through digitization or other lending processes, make them available.

R | Research! As one of the 27 institutes and centers of the National institutes of Health, we are a research operation. We have two intramural research programs, one in computational biology and one exploring clinical data through natural language processing, machine learning, and deep learning approaches. We also support research training and fund basic and applied research in biomedical informatics at universities and research centers. In addition, given our rich literature and data resources, we help researchers around the world. Indeed, I would posit that no biomedical discovery has occurred in the past 50 years that hasn’t been touched by our research.

A | Answers. Between our online resources and our cracker-jack staff, NLM provides answers, whether to the questions of a young parent worried about a child’s rash, to the high school student exploring genetics, to the physician seeking treatment options for a thorny case. And where we can’t provide the answer, we can still point people in the right direction by recommending websites, materials, or organizations to consult.

R | We reach out to a range of customers and stakeholders in every way we can. We train scientists who must register their studies in ClinicalTrials.gov. We support projects in underserved communities to ensure everyone can access current, quality health information. And we work with our partners in the National Network of Libraries of Medicine to get our resources into every corner of the country, serving industry, local governments, and communities as a whole.

Y |Though this library is almost 200 years old, we must be ready for the youth of today who will become the scientists, clinicians, and patrons of tomorrow. These young people take to Instagram and Snapchat rather than email and expect visual and interactive experiences rather than reading. We are inspired by them to build toward a future where reading our resources is only one of the ways to help foster the public’s health.

One day, some of those young people will become part of the 1,700 strong who make NLM hum, and one of them will be NLM’s director, talking or writing about the many things that continue to make this place special. Like today, I’m sure the staff will be at the top of the list.

Thank you for all you do, colleagues!

National Public Health Week 2018: Changing Our Future Together

Guest post by Lisa Lang, head of NLM’s National Information Center on Health Services Research and Health Care Technology

The secret is out: The National Library of Medicine supports National Public Health Week every day, all year.

We have been committed to supporting the public’s health since our establishment in 1836. From its start as the library of the US. Army Surgeon General, the statutory mission of NLM has been “…to assist with the advancement of medical and related sciences and to aid in the dissemination and exchange of scientific and other information important to the progress of medicine and to the public health.”

Today, we look toward implementing our new strategic plan and a vision of NLM as a platform for biomedical discovery and data-powered health.  In that vision, we assure progress for all by working closely with our partners and colleagues in biomedical research, medicine, and public health—living out this year’s message for National Public Health Week, “Changing our future together.”

A year ago or so, NLM Director Patricia Flatley Brennan sat down for an interview with The Nation’s Health, a publication of the American Public Health Association, and enthusiastically described NLM’s many resources [PDF] and activities that support the work of public health. Those resources are free and available to all 24/7, every day of the year.  Even the most specialized resources can be accessed by the general public.

But today, during National Public Health Week, we take the opportunity to highlight the many ways NLM can help those in public health meet their charge to change the future.

This year, this annual event is focusing on such critical public health issues as access to effective behavioral health services; communicable diseases; environmental health; injury and violence; and ensuring the right to health. It’s a bold agenda, one we can only achieve by working together.

And NLM is doing its part.

For example, looking at just one of this week’s themes, Injury and Violence Prevention, we can find information coming out of NLM that addresses an array of needs:

  • Seeking current, high-quality general literature, but don’t know where to start?
    Dip into NICHSR ONESearch to simultaneously search across four key resources for evidence-based public health: the webportals for the public health and health services research communities and two unique health services research databases.
  • Looking for the latest research in the journal literature?
    Run one of the pre-set PubMed queries for the Leading Health Indicators addressing injury and violence. (Leading Health Indicators are a subset of the national public health goals, “HealthyPeople 2020,” that track our 10-year progress in achieving these key objectives.)
  • Hunting for tools, statistics, data sets, research reports, or PubMed queries?
    Check out the Health Services Research topic page on domestic violence, which covers intimate partner violence, sexual coercion, and child or elder abuse, or review the list of resources addressing the intersection of domestic violence and HIV/AIDS.
  • Trying to cope with disasters, violence, or traumatic events?
    Consult the quality sites NLM’s Disaster Information Management Research Center has pulled together to help both the public and specialists, including first responders, health care providers, journalists, and teachers, deal with—or help others deal with—the stress and emotional struggles that follow such incidents.
  • Looking for clinical trials or research projects related to domestic violence?
    Comb through the actively recruiting trials registered with ClinicalTrials.gov or the recently funded health services research projects in HSRProj (Health Services Research Projects-in-Progress).
  • Helping consumers or patients improve their understanding of violence as a health topic?
    Head over to MedlinePlus for straightforward, consumer-level information about injuries, violence, and abuse.
  • Hoping to learn from the past to help prevent future violence?
    Explore NLM’s recent exhibition Confronting Violence: Improving Women’s Lives.

And that’s not the end of it.

Our National Network of Libraries of Medicine—more than 6,000 member libraries strong—is available to assist the public and public health professionals with access to quality health information. And NLM supports terminologies and tools that foster the collection of high-quality data for research and practice.

We are all in this together. NLM and public health: working together today and for the future.

casual headshot of Lisa LangGuest blogger Lisa Lang is Assistant Director for Health Services Research Information and also Head of NLM’s National Information Center on Health Services Research and Health Care Technology (NICHSR).