Ebook: Transforming Biomedical Informatics and Health Information Access: Don Lindberg and the U.S. National Library of Medicine

This preface introduces the book, Transforming biomedical informatics and health information access: Don Lindberg and the U.S. National Library of Medicine. The preface includes information about the book’s development process and intended audiences. The book’s contributions comprise four thematic sections. The first section documents advances in biomedical informatics during Dr. Lindberg’s career, emphasizing contributions made by teams of talented individuals at the U.S. National Library of Medicine (NLM). The second section describes how NLM’s creation of new access methods to diverse biomedical databases improved information access for health care professionals, biomedical researchers, and the public. The third section explains how NLM outreach programs improved access to health information among underserved audiences and communities. The fourth (and more informal) section provides brief memoirs about Dr. Lindberg’s life, character, and humanism.

This overview summary of the Informatics Section of the book Transforming biomedical informatics and health information access: Don Lindberg and the U.S. National Library of Medicine illustrates how the NLM revolutionized the field of biomedical and health informatics during Lindberg’s term as NLM Director. Authors present a before-and-after perspective of what changed, how it changed, and the impact of those changes.

As a young pathologist, Donald A.B. Lindberg, M.D., tirelessly sought scientific solutions to clinical and research problems. Directing several clinical laboratories at the University of Missouri in Columbia, Dr. Lindberg developed the world’s first computerized laboratory information system, speeding analysis and reporting. He directed his team in building computer systems to help clinicians retrieve medical knowledge, enable patients to find information about personal or family health issues, and provide expert automated assistance to physicians in reaching differential diagnoses outside their specialties. Developing superior functionalities with the limited information technologies of the time, Dr. Lindberg’s pioneering work in Columbia foreshadowed his subsequent inspired leadership as Director of the United States National Library of Medicine.

Among the many contributions of Donald A.B. Lindberg was his work on behalf of a variety or professional organizations in the field of biomedical and health informatics. These began during his early days at the University of Missouri and continued throughout his 30 years at the National Library of Medicine. This chapter summarizes that work, which occurred both through his personal efforts and through the impact of the NLM under his leadership. Examples include his role in the development of organizations themselves (e.g., the International Medical Informatics Association, the American College of Medical Informatics, and the American Medical Informatics Association) and also his contributions to the professional scientific meetings that have advanced the field (e.g., the Symposium on Computer Applications in Medical Care, MEDINFO, and the AMIA Annual Symposium).

The Integrated Academic/Advanced Information Systems (IAIMS) program began in 1983 and was based on a study by the Association of American Medical Colleges (AAMC). Donald A.B. Lindberg M.D. was a member of the AAMC Advisory Committee. The U.S. National Library of Medicine (NLM) grants for IAIMS were initiated in 1984 the same year Dr. Lindberg became Director of the NLM. This chapter presents an overview of IAIMS and its progression through three stages with Dr. Lindberg’s leadership.

Through his visionary leadership as Director of the U.S. National Library of Medicine (NLM), Donald A.B. Lindberg M.D. influenced future generations of informatics professionals and the field of biomedical informatics itself. This chapter describes Dr. Lindberg’s role in sponsoring and shaping the NLM’s Institutional T15 training programs.

The U.S. National Library of Medicine’s Biomedical Informatics Short Course ran from 1992 to 2017, most of that time at the Marine Biological Laboratory in Woods Hole, Massachusetts. Its intention was to provide physicians, medical librarians and others engaged in health care with a basic understanding of the major topics in informatics so that they could return to their home institutions as “change agents”. Over the years, the course provided week-long, intense, morning-to-night experiences for some 1,350 students, consisting of lectures and hands-on project development, taught by many luminaries in the field, not the least of which was Donald A.B. Lindberg M.D., who spoke on topics ranging from bioinformatics to national policy.

The U.S. National Library of Medicine’s (NLM) funding for biomedical informatics research in the 1980s and 1990s focused on clinical decision support systems, which were also the focus of research for Donald A.B. Lindberg M.D. prior to becoming NLM’s director. The portfolio of projects expanded over the years. At NLM, Dr. Lindberg supported various large infrastructure programs that enabled biomedical informatics research, as well as investigator-initiated research projects that increasingly included biotechnology/bioinformatics and health services research. The authors review NLM’s sponsorship of research during Dr. Lindberg’s tenure as its Director. NLM’s funding significantly increased in the 2000’s and beyond. Authors report an analysis of R01 topics from 1985–2016 using data from NIH RePORTER. Dr. Lindberg’s legacy for biomedical informatics research is reflected by the research NLM supported under his leadership. The number of R01s remained steady over the years, but the funds provided within awards increased over time. A significant amount of NLM funds listed in RePORTER went into various types of infrastructure projects that laid a solid foundation for biomedical informatics research over multiple decades.

Precision medicine offers the potential to improve health through deeper understandings of the lifestyle, biological, and environmental influences on health. Under Dr. Donald A.B. Lindberg’s leadership, the U.S. National Library of Medicine (NLM) has developed the central reference resources for biomedical research and molecular laboratory medicine that enable precision medicine. The hosting and curation of biomedical knowledge repositories and data by NLM enable quality information reachable for providers and researchers throughout the world. NLM has been supporting the innovation of electronic health record systems to implement computability and secondary use for biomedical research, producing the scale of linked health and molecular datasets necessary for precision medicine discovery.

When Donald A.B. Lindberg M.D. became Director in 1984, the U.S. National Library of Medicine (NLM) was a leader in the development and use of information standards for published literature but had no involvement with standards for clinical data. When Dr. Lindberg retired in 2015, NLM was the Central Coordinating Body for Clinical Terminology Standards within the U.S. Department of Health and Human Services, a major funder of ongoing maintenance and free dissemination of clinical terminology standards required for use in U.S. electronic health records (EHRs), and the provider of many services and tools to support the use of terminology standards in health care, public health, and research. This chapter describes key factors in the transformation of NLM into a significant player in the establishment of U.S. terminology standards for electronic health records.

Donald A.B. Lindberg M.D. arrived at the U.S. National Library of Medicine in 1984 and quickly launched the Unified Medical Language System (UMLS) research and development project to help computer understand biomedical meaning and to enable retrieval and integration of information from disparate electronic sources, e.g., patient records, biomedical literature, knowledge bases. This chapter focuses on how Lindberg’s thinking, preferred ways of working, and decision-making guided UMLS goals and development and on what made the UMLS markedly “new and different” and ahead of its time.

The highest priority new initiative resulting from the 1985–86 National Library of Medicine Long Range Planning exercise initiated by NLM Director Dr. Donald A.B. Lindberg was the creation of new information resources and services related to molecular biology and genetics, termed “biotechnology information”. Beginning with existing NLM resources and research projects associated with molecular data, and with Lindberg’s enthusiastic support, the institution launched a Congressionally-mandated Center that has become an essential part of 21st century biomedical science.

From 1992 to 1995 Donald A.B. Lindberg M.D. served concurrently as the founding director of the National Coordination Office (NCO) for High Performance Computing and Communications (HPCC) and NLM director. The NCO and its successors coordinate the Presidential-level multi-agency HPCC research and development (R&D) program called for in the High-Performance Computing Act of 1991. All large Federal science and technology R&D and applications agencies, including those involved in medical research and health care, participate in the now-30-year-old program. Lindberg’s HPCC efforts built on his pioneering work in developing and applying advances in computing and networking to meet the needs of the medical research and health care communities. As part of NLM’s participation in HPCC, Lindberg promoted R&D and demonstrations in telemedicine, including testbeds, medical data privacy, medical decision-making, and health education. That telemedicine technologies were ready to meet demand during the COVID-19 pandemic is testament to Lindberg’s visionary leadership.

This paper gives a flavor of Dr. Donald A.B. Lindberg’s view of the expanding role of libraries, his curiosity, and his tolerance for taking educated risks, through the creation and nurturing of National Library of Medicine’s Visible Human Project. That project produced the Visible Man and Visible Woman datasets and a suite of tools for presenting and analyzing those and similar datasets. The results are used in teaching anatomy and other medical school courses and in software from the open-source Insight Tool Kit (ITK) that is included in many if not most volume-reconstructing systems. This story is a bit personal. From the beginning we recognized and understood each other since we were both “boys from Brooklyn”.

When Donald A.B. Lindberg M.D. became Director of the U.S. National Library of Medicine in 1984, trained searchers, primarily librarians, conducted less than three million searches of NLM databases. They paid for their fair share of the commercial telecommunications costs to reach NLM’s computer system. In 2015 when Lindberg retired, millions of scientists, health professionals, patients, members of the public, and librarians conducted billions of free searches of NLM’s greatly expanded electronic resources via the Internet. Lindberg came to NLM intending to expand access to biomedical and health information along multiple dimensions: reaching more users, providing more types and volumes of information and data; and improving the conceptual, technical, and organizational connections needed to provide information to users when and where it is needed. By any measure he and NLM were spectacularly successful. This chapter discusses some key decisions and developments that contributed to that success.

Donald A.B. Lindberg M.D. arrived as Director, U.S. National Library of Medicine (NLM) in late 1984 with the intention of implementing a physician-friendly interface to MEDLINE, a prime example of his interest in making NLM information services more directly useful in medical care. By early 1986, NLM’s Grateful Med, an inexpensive PC search interface to MEDLINE useful for health professionals, had joined the group of end-user systems for searching MEDLINE that emerged in the 1980s. This chapter recounts Grateful Med’s rapid iterative development and the subsequent campaign to bring it to attention of health professionals. It emphasizes Lindberg’s role, the challenges faced by those introducing and using the interface in a pre-Internet world, and some longer-term effects of the effort to expand health professionals’ use of MEDLINE during the decade from 1986 to 1996.

When Donald A.B. Lindberg M.D. was sworn in as Director of the National Library of Medicine (NLM) in 1984, MEDLINE, NLM’s online database of citations and abstracts to biomedical journal articles, was searched primarily by librarians trained to use its command language interface. There were fees for searching, primarily to recover the cost of using commercial value-added telecommunications networks. Thirteen years later, in 1997, MEDLINE became free to anyone with an Internet connection and a Web browser. This chapter provides an insider’s view of how Dr. Lindberg’s vision and leadership – combined with new technology, astute handling of policy issues, and key help from political supporters and influential advocates – enabled a tremendous expansion in access to biomedical and health information for scientists, health professionals, patients, and the public.

When Dr. Lindberg was sworn in as Director, the National Library of Medicine (NLM) was providing few resources with information useful to the public, having concentrated efforts towards health professionals and scientists. With his arrival, and that of the Internet in the 1990s, NLM embarked on a research and user-focused path towards providing authoritative health information for patients, families and the public. MedlinePlus, NIHSeniorHealth, and MedlinePlus en espanol delivered health information in a variety of formats using text, still images, audio and video. These resources were supported by NLM advisors and Dr. Lindberg’s strong belief that patients and families needed easy access to medical information to be able to effectively care for themselves in illness and maintain the best health possible throughout their lives.

Donald A.B. Lindberg M.D.’s interests extended far beyond his scientific expertise into the arts and humanities, as evidenced, for example, by his love of opera, his talents in photography, and his affection for history. It is therefore not surprising that he had a strong interest in the National Library of Medicine’s historical programs and services, going beyond supporting these activities to becoming actively involved in some of them. The subject of this essay is Dr. Lindberg’s contributions to these programs and services, which may be grouped under three main headings: placing greater emphasis on more contemporary history, promoting the digitization of historical materials to increase access, and enhancing outreach through an exhibition program.

Donald A.B. Lindberg M.D., Director of the U.S. National Library of Medicine (NLM) from August 1984–March 2015, had a remarkable vision for NLM’s scope, goals, and function. This vision resulted in many external partnerships and initiatives with the publishing industry, commercial and non-profit, journal editors, and professional organizations. These partnerships ranged from ongoing collaboration and dialogue, such as the NLM Publisher’s Committee and the International Committee of Medical Journal Editors (ICMJE). to the more practical, such as the creation of HINARI and the Emergency Access Initiative (EAI). Dr. Lindberg fostered partnerships outside the NLM to expand the use and reach of Library resources, including MEDLINE and ClinicalTrials.gov to support innovations in the processes that build them, and improve the quality of biomedical journals. Dr. Lindberg also encouraged the use of technology to enhance medical information and supported the early development of fully interactive publications. Attitudes that contained a measure of skepticism and distrust faded as collaborators came to have a better understanding of both NLM and their partners. This chapter discusses these relationships and accomplishments that NLM achieved working with publishers and other creators and disseminators of medical information under Dr. Lindberg’s leadership.

This chapter describes how the U.S. National Library of Medicine (NLM), under the leadership of Donald A.B. Lindberg M.D., promoted new and expanded roles for librarians and information specialists in response to advances in technology and public policy. These advances brought information services directly to all potential users, including health professionals and the public and stimulated NLM to expand its programs, policies, and services to serve all. Dr. Lindberg included librarians and information specialists in all of NLM’s new endeavors, helping both to recognize and establish new or expanded roles. The involvement of librarians and information specialists in multidisciplinary healthcare research teams, in underserved communities, and in research data management and compliance has helped to redefine the health sciences information profession for the 21st century.

Donald A.B. Lindberg M.D. was a strong proponent of self-improvement for all professions. He believed it was imperative for health sciences librarians to embrace lifelong learning as the Internet and networked information radically changed their work and opened new opportunities to increase their scope and impact. During Dr. Lindberg’s 1984–2015 tenure as its Director, the U.S. National Library of Medicine (NLM) became an even more dominant influence on education and career development of health sciences librarians. This chapter focuses on the way NLM partnered with other institutions and organizations to ensure that education and training were consistently part of the roll-out of new NLM programs and services as they were implemented.