Ah, but I was so much older then / I’m younger than that now

I’m just passing the one-year mark in my tenure as Director of the National Library of Medicine. It has been an exciting year for me, filled with many learnings and lessons, and with each week I grow more delighted with this outstanding organization. I have the great good fortune of having taken a leap into an uncertain-but-promising opportunity and finding it to be more rewarding, more delightful, and more engaging than I had anticipated—and I took this position with very high hopes!

I have grown a lot since I arrived here in August 2016, and as the master balladeer Bob Dylan noted, “I was so much older then / I’m younger than that now.” A deep passion for NLM, its mission, its resources, and the people who work here replaces the early hope and excitement that accompanied me on my move to Bethesda. The bravado of vision is supplanted by the realities of working in the federal system. Acronyms and abbreviations now evoke people and processes for me. I have learned to appreciate the rich tapestry of scholarship, service, citations, and collections that make up the NLM. I have met many of our stakeholders and have come to see them as collaborators. And I’ve developed a new appreciation of the Library, not simply as a collection of resources, but also as a dynamic interaction of health and information.

Here are some surprises. I am struck by a sense of patriotism I found resting quietly deep in my soul. As the director of the only federally funded health library, I am responsible for ensuring our resources are expended in support of the public’s health—supporting discovery, knowledge delivery, and personal health management. I am proud of the 1,700 women and men who choose to work here, applying their knowledge and talents in service of society. And I am committed to weaving the tenets of open science through the mantle of government service.

I am amazed at how big the Library is—not just our buildings, with their byzantine hallways and underground spaces, but the human and electronic reach. Because of our 6,500-member National Network of Libraries of Medicine, the NLM has a footprint in almost every single county, and in American Samoa, Guam, Northern Mariana Islands, Puerto Rico, and the Virgin Islands. There is no country in the world that our resources can’t touch. We have 26 million citations in our PubMed bibliographic repositories, and petabytes of data moving in and out of our NCBI resources EVERY DAY!

And I am grateful—to the security guards who help protect our precious holdings, to our scientists who are finding ways to use literature and data to help our nation meet health crises such as the opioid epidemic, to our technical services team who keep our resources available 24 hours a day. I am grateful to the staff who have greeted me with welcome and patiently reminded me of their names. I am making progress, but I’ve still got a lot to learn.

Dylan’s words appeal to me because they characterize the arch of a journey, from initial awareness through growing familiarity to deep realization that the National Library of Medicine is truly a national treasure, and I am both humbled and proud to be guiding it towards its third century of service.

Photo credit (hourglass, top): Scott Schrantz [Flickr (CC BY-NC-SA 2.0)]

Are we there yet?

On the road to data science at NLM

I can’t believe eight months have passed since I promised to “outline NLM’s plan to become what the ACD report recommended—the ‘epicenter of data science for the NIH.’” In June I sketched out a bit of that plan in our companion blog, DataScience@NIH, and recapped a handful of NLM efforts and accomplishments in data science.

I am immensely proud of these accomplishments, but I cannot take credit for them. As is often said, it takes a village…and we could achieve all that we have only through the combined efforts of staff across the entire Library.

How have we done it?

First, we try to be clear about the issue we’re addressing, clarifying and refining what we mean when we say “data science.” For me, data science comprises the principles and practices that underlie the effective use of data to glean insights and make new discoveries. To others it’s applying machine learning or biostatistics to investigate massively large data sets, as in our Lister Hill Center scientists’ exploration of the MIMIC data set or the Medicare claims data. And through Extramural Programs, we’re helping to fund yet another view of data science—the development of new analytical and methodological tools that can make personal medical data useful to patients and family members.

Second, we listen to the wisdom of our advisors. We’ve engaged over 150 experts and colleagues from across the country in NLM’s strategic planning process overseen by Drs. Dan Masys and Jill Taylor from our Board of Regents. Their report is still forthcoming, but in essence, they’ve advised us to build on our strengths, to remain true to our core mission, and to prepare for a future where data serve as a substrate to discovery.

To me their guidance translates to generating new methods at the intersection of library science, data science, and computer science to acquire, catalog, preserve, and make available data in the same way we’ve done for the scientific literature. If done well, that work will help accelerate the NIH “big science” initiatives (e.g., the BRAIN Initiative, All of Us Research Program, the Cancer Moonshot) while simultaneously ensuring the data can be applied to the broad range of environmental, behavioral, and social determinants of health.

Achieving a data-driven future will be—in fact, must be—a trans-NH accomplishment.

Third, we interact with colleagues across the NIH. Every month or so I convene a panel of directors of NIH institutes and centers to get their perspectives on the data science issues NIH faces and the ways NLM might respond to these challenges. Together we’re working to pair the institutes’ and centers’ domain-specific needs, which call for a certain degree of independence and flexibility, with the wisdom, benefits, and power of a collaborative response. It’s a balancing act, one made easier by a shared dedication to a data-powered future for health and biomedical research.

Fourth, we look within. Members of NLM’s leadership team are working with the women and men in each of their divisions to critically appraise what resources, processes, or practices we already have that can help resolve existing challenges in data science (e.g., the principles of curation or our investments in common data elements), as well as to figure out what new skills and resources we must develop. This whole process requires that we provide a safe space for staff to explore their future options while feeling confident and secure in their present positions—not a simple task.

And finally, we strive for efficiency. We’re sorting out the roles and responsibilities of a range of committees, work groups, and task forces, trying to avoid redundancies and respect boundaries while making effective use of the time and talents we have to apply to this exciting opportunity.

In summary, we are making progress in data science by talking (and listening) to each other—a lot—and by keeping in mind that achieving a data-driven future will be—in fact, must be—a trans-NH accomplishment.

So, are we there yet?

We know the future of NLM as the epicenter of data science will draw on our past and be shaped by the interactions of our present. We have over 180 years of tradition that serve as a solid platform from which to launch that future. We’re building the communication pathways to support visioning, accountability, and engagement. Most importantly, we’ve got the right people in the right discussions at the right time.

So, we may not be there yet, but we are well on our way!

But what more do we need to do to fuel our journey? What road hazards lie ahead? Let me know what you would do if you were at the wheel.

On the Importance of Getting Away

Work-life balance is essential for a high-performing organization.

You can’t tell, but I am actually on vacation. I’ve taken off on a two-week road trip with a good friend. We’re traveling through the South and Southeast, enjoying friends in Asheville and Birmingham, checking out the music scenes in Memphis and Nashville, and visiting the monument to the Little Rock Nine honoring the high school students who, in 1957, braved physical and verbal abuse to desegregate Little Rock Central High School.

Two weeks of relaxing, reading, learning, visiting, and spa-ing are definitely good things.

I’ve been fortunate to have had many memorable vacations throughout my life, from camping trips in Maine with my parents and nine siblings to quick get-aways to the Jersey shore to some delightful work trips that let my son, Conor, and I add on time to explore parts of Asia, Europe, and South America. I have been lucky to have had the resources to fund vacations and the support of colleagues who made sure the work at home continued while I was away.

Through it all, I have come to realize it is just as important to have spaces between work as it is to have meaningful work.

As a nurse and an industrial engineer, I know that human performance is at its best when one takes breaks to relax and refresh. Inspiration gleaned during a hike through the woods can fuel the next research idea. Appreciating a centuries-old temple can open the mind and put into perspective a particularly knotty work challenge. And cleaning out closets or attending to family matters during a staycation can ease worry and bring a sense of peace that leaves you feeling rejuvenated.

At NLM I encourage staff to take time away. I believe that a high-quality work-life balance is essential for a high-performing organization. It’s important to me as a leader to accept, even support, time away from the office and away from work.

So I urge you—to the extent possible—take time and get away: a week, a weekend, even a day. You’ll return to your work with fresh perspectives and a well-rested countenance.

Remember, too, to help colleagues get away, both through your encouragement and by picking up a bit of extra work, if needed. You’ll learn something, your coworkers will benefit, and your operation will be well on its way to greatness.

What does a glioblastoma look like?

Guest post by James G. Smirniotopoulos, MD, chief editor for MedPix®.

Arizona Senator and former Vietnam POW John McCain was recently diagnosed with the most aggressive form of brain cancer: glioblastoma.  This is the same type of tumor that killed Vice President Joe Biden’s son Beau and Senator Ted Kennedy.

Glioblastoma originates in the brain. It arises from astrocytes,  one of the supporting cells of the brain, and grows by sending tendrils into the surrounding tissue.

Because of its diffuse nature, glioblastoma is not curable. However, surgery to remove as much of the tumor as possible, followed by both radiation and chemotherapy, has improved the prognosis. Median survival rates—which means half the patients live longer and half die sooner—now run 15-18 months, whereas 5-10% of patients live five years following diagnosis. Novel treatments, including immunotherapy, have been effective in some patients.

The symptoms of glioblastoma can vary, depending on the part of the brain in which it occurs. Different parts of the brain perform different functions, so some tumors cause seizures, while others may cause numbness or speech problems. Some of the most common symptoms are:

  • Headaches
  • Nausea and vomiting
  • Changes in your ability to talk, hear, or see
  • Problems with balance or walking
  • Problems with thinking or memory
  • Feeling weak or sleepy
  • Changes in your mood or behavior
  • Seizures

Doctors diagnose glioblastomas and other brain tumors by doing a neurologic exam and tests including an MRI, CT scan, and biopsy.

MedPix®, NLM’s open-access medical image database, includes about 500 images of glioblastomas, largely MR and CT scans, gross photographs, and pathology slides of tumor histology.

For example, the following images show two different glioblastomas. The image on the left is from an MRI (axial, T2-weighted) of Patient A and that on the right is an axial gross cut-section from Patient B. The tumors, outlined in red, show a general similarity in shape and size, and both tumors have distorted the brain and compressed normal structures, like the cerebral ventricles (blue outline) that contain cerebrospinal fluid.

two brain images with the glioblastoma tumors outlined
MedPix images of similar glioblastomas from two different patients show the tumors (outlined in red) pushing on the surrounding tissue and compressing the cerebral ventricles (highlighted in blue).

Launched in 1999, MedPix now holds over 54,000 images from more than 12,000 patients, including unique whole brain sections from the era preceding non-invasive diagnosis using MRI and CT imaging. Designed as a teaching file, the database includes clinical information about each patient, along with their diseases and diagnoses. The medical cases in MedPix have been peer-reviewed and pathologically proven, making them an excellent resource for teaching and learning about disease.

Guest blogger James G. Smirniotopoulos, MD, serves as chief editor for MedPix. Now retired and a special volunteer at NLM, Smirniotopoulos formerly served as a professor and chair of radiology at the Uniformed Services University of the Health Sciences.

Hospital Libraries Matter

Libraries impact clinical decision-making, support hospital functions.

Guest post by Basia Delawska-Elliott and Donna Belcinski, medical librarians serving hospitals in Oregon and Connecticut.

Recently there have been a number of messages going out to medical library discussion lists announcing the unfortunate closing of yet another hospital library. It seems that, in this era of for-profit medicine, libraries are looked upon as luxuries. Yet those of us who work in them know our services are not only needed but valued by the physicians, nurses, and other health professionals who regularly call on us to answer their questions.

Anyone who doubts the need for information professionals in a hospital probably doesn’t understand what we do.

Many people think everything is on Google, and it might be, but it’s not easy to find. Medical literature is found in databases that often require time, patience, and skill to search, and a subscription to access.

Furthermore, someone has to assess the information needs of the hospital community, negotiate pricing for and purchase the resources that best fit those needs, work with vendors and the institution’s IT department to set up access to the resources, and then navigate the resources to retrieve what is in them.

Searching databases takes time, patience, and skill. While it is certainly possible for medical professionals to have the patience and skill, do they really have the time? How many nurses and physicians, in the course of a busy 12-hour shift, can find the time to search the medical literature?

A point-of-care tool can give a quick answer, but if something in-depth or out of the ordinary is required, those tools aren’t usually helpful. More specialized skills and knowledge of how information is organized are needed to answer complex clinical questions. Hospital librarians have not only the educational background, but also the experience to navigate databases and retrieve hard-to-find information.

symbols representing different types of medical information hover over a laptop on which a doctor typesMany people don’t seem to understand what a librarian does, why it’s different from a Google search, and that the “information bubble” is as real in medicine as it is in other disciplines. They may also be unaware that googling can lead to selective retrieval of information and confirmation of bias. The groundbreaking 1992 Rochester study (Marshall) and the 2013 follow up (Marshall) showed the vast majority of physicians changed the course of patient treatment based on library-provided information—80% in 1992, 75% in 2013. This telling statistic confirms that librarian-mediated searches and resources curated by hospital librarians do make a difference.

Every time a hospital library closes, we send out a call to arms and vow to stem the tide of attrition in our ranks. Yet the task of saving hospital libraries has become increasingly difficult. Once mandated by law, requirements for hospital libraries have been dropped by regulatory agencies—first by the Health Care Financing Administration in 1986, then The Joint Commission in 1993. In the climate of expense cuts, this shift has made hospital libraries an easy target. Point-of-care products, which synthesize current evidence in support of decision-making regarding tests, interventions, or diagnosis, have also made it more difficult to convince administrators that other information resources are still needed—and oftentimes more reliable. And with health systems increasingly consolidating, health system administrators—now  removed from everyday hospital concerns—may see the library only as an expense and not as an asset their hospital staff value and rely upon.

Although hospital librarians have primarily concentrated on providing patient-care information, we also support a number of different important hospital functions and initiatives including research, information literacy training, graduate medical education, undergraduate and graduate nursing and allied health education, continuing education, Magnet preparation, evidence-based nursing practice, and hospital administrative and competitive intelligence research. Cuddy (2005) described a similar assessment of the breadth of library contributions in the Fuld Campus study.

The value of a hospital librarian has been proven. And with doctors and nurses asked to practice evidence-based medicine, is it really wise to close hospital libraries and dismiss the professionals best equipped to find that evidence?

What steps can we take to ensure the latest announcement of a hospital library closing is the last?

Sources cited
Cuddy, T.M. (2005). Value of hospital libraries: The Fuld Campus study. Journal of the Medical Library Association, 93, 446-449.

Marshall, J.G. (1992). The impact of the hospital library on clinical decision making: The Rochester study. Bulletin of the Medical Library Association, 80, 169-17.

Marshall, J.G., Sollenberger, J., Easterby-Gannett, S., Morgan, L. K., Klem, M. L., Cavanaugh, S. K., . . . Hunter, S. (2013). The value of library and information services in patient care: Results of a multisite study. Journal of the Medical Library Association, 101(1), 38-46.

Photo credit (top): Flickr | New Jersey Library Association (CC BY-NC-ND 2.0) | cropped