On Wednesday, May 14, leaders in medicine, science, IT and librarianship convened at the Natcher Center on the NIH campus to reflect on the contributions the National Library of Medicine has made over the last 30 years, and help chart its course for the future.
They were drawn to “The National Library of Medicine, 1984 -2014: Voyaging to the Future,” a symposium co-sponsored by the NLM Board of Regents, the Friends of the NLM and the Medical Library Association. The event was the Library’s first step in developing its next long range plan.
Attendees discussed NLM’s past role and future opportunities in key areas: access to information and data; conducting and funding informatics research; and training future generations of librarians and informatics researchers.
You are invited to add your comments on NLM’s past and its future by visiting the Voyaging to the Future symposium blog http://voyagingtothefuture.nlm.nih.gov. There, you also will find the agenda for the event, which was recorded and can be viewed on the NIH videocast site.
Whether clinician, medical librarian, NLM grantee, computer or bioinformatics expert, NIH staffer, distinguished scientist, government official, or corporate executive, they voiced overwhelming support of the NLM’s record of the last three decades under the leadership of NLM Director Donald A.B. Lindberg, MD.
The following comments provide a sense of the depth and breadth of the symposium.
Floating on waves of progress
Dr. Lindberg reflected on major achievements he said stemmed from the ideas of the people who served on NLM’s long range planning groups and advisory committees, many of whom were in the audience.
“If you hear something you like, take credit for it,” he said as he described the genesis of the National Center for Biotechnology Information (NCBI), the Visible Human Project (a digital library of the human anatomy); the Unified Medical Language System (UMLS) which helps computer systems work together; outreach to the underserved; and 24/7 access to information.
Technology and “luck” helped too. “We floated ahead on waves of progress by other people, even other organizations,” he said, noting advances in computing machines, telephone networks and Internet access.
“On the science side, I would say the Human Genome Project and its knowledge revolution were advantages,” continued Dr. Lindberg. “The awakening of informed patients and their demands for information and understanding…and then public policies that supported minority rights….Those are some of the waves that we took advantage of that carried us forward.”
“The last 30 years have been absolutely wonderful fun,” observed the NLM Director.
One of the jewels in the crown
The Honorable Louis Sullivan, MD, former Secretary of Health and Human Services who served on an NLM planning group said, “It’s hard for me to imagine a world without the National Library of Medicine.”
“The NLM has, over the past 30 years, radically altered how scientists, health professionals, and the public find the information they need for research, practice, and personal use.”
“NLM has been characterized as one of the jewels in the crown of the Public Health Service, and I certainly agree with that.”
True, open access publication
Former NIH Director and current National Cancer Institute Director, Harold Varmus, MD, recalled the creation of PubMed Central, the free, full-text archive of biomedical literature.
“The capacity provided by the Internet to change in a fundamental way the practice of science became a substrate for some imaginative thinking by [NCBI Director] David Lipman and many others to change the way we practice our art…to make the scientific literature better used, more informative, more accessible not just to scientists but to everybody around the world.”
Taking huge risks
William Lorensen, MS, vividly recalled his experience as a General Electric researcher working on Insight Toolkit (ITK), also known as the Visible Human Software Project,
“When I think of the NLM, it’s a four-letter word: O-P-E-N! The Visible Human provided us with data that was publicly available so we could compare them and they were large and multimodality.”
“They took two huge risks: creating the data sets—the technology barely existed, and contracting to build a large software toolkit to process the data. Now this software is used all over the world.”
“NLM provided the leadership that allowed us to do this. This is a best practice of open science for future NIH projects. I never worked on a more stimulating or satisfying project.”
Training future leaders
James Cimino, MD, pointed out the singular position NLM takes within NIH when it comes to informatics. Dr. Cimino is Chief of the Laboratory for Informatics Development in the NIH Clinical Center, and an NLM investigator who has directed NLM-sponsored courses in biomedical informatics.
“The NLM stands above all other institutes at NIH in understanding that informatics is a research endeavor, and has made a priority to train informatics researchers. Other people are teaching researchers how to use informatics tools. The NLM is teaching researchers how to build informatics tools.”
Chaos without NLM
Isaac Kohane, MD, PhD, an NLM grantee, whose research uses whole healthcare systems as “living laboratories,” said, “As informaticians, it is important for us to realize what chaos would have been present had NLM not been there to organize us.”
Patients show their power
Alexa McCray, PhD, recalled the development of ClinicalTrials.gov. McCray, who directs the Harvard Medical School Center for Biomedical Informatics, led ClinicalTrials.gov during her years at NLM.
“The legislation for ClinicalTrials.gov actually came from very active patient advocacy groups, who demanded access to clinical trials information because, at the time in the mid-1990s, it was very difficult for patients to find clinical trial information. They were dependent on their doctors and local organizations. They pushed very hard for the legislation. When we were first developing ClinicalTrials.gov, we took that seriously. This is a place people could come, one stop shopping, to find clinical trial information….It shows the power of patients….. We owe them the patient community a great debt.”
A librarian’s perspective
Elaine Martin, MSLA, DA, director of Library Services at the University of Massachusetts Medical School described how NLM has helped change the professional identity of librarians and librarianship through its development of new products and services and its support for training.
“As information becomes more easily available, the need for libraries and librarians is being questioned. Librarians have needed to continue to reinvent themselves and it’s through NLM’s invaluable support that we’ve been able to define new, specialized roles for librarians called consumer health librarian or disaster information specialist, or e-science librarian just to name a few.”
In the future, Martin said she sees medical librarians “forming new relationships with the research community and data information scientists. We’ll have to become more specialized in our services and more customized in our services.”
Caring about the future
Perhaps among symposium participants, Katherine Gottlieb, MBA, DPS, CEO of the Southcentral Foundation, a health care organization in Alaska, and an NLM Board Member was uniquely qualified to make the case for NLM’s once and future role.
She said, “I am a mother of six, grandmother of 27, and just had my first great grandchild. Why do I care what happens in health care? You know why I care.”
“The National Library of Medicine is a means to dispense quality health information globally, through its own media, and through partnerships with the universities, HHS, the military, CDC, tribes, and of course, through medical libraries nationally.”
By Christopher Klose, NLM in Focus contributor
Photos by Ernie Branson
Top Photo, NLM Director Donald A.B. Lindberg, MD. Bottom Photo, the Honorable Louis Sullivan, MD.