The multiple dimensions of expanded access to health information: Don Lindberg and the U.S. National Library of Medicine.

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.

Something new and different: The Unified Medical Language System.

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 computers 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 U.S. National Library of Medicine and standards for electronic health records: One thing led to another.

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.

Grateful Med: Direct access to MEDLINE for health professionals with personal computers.

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.

How to earn a reputation as a great partner.

Boundary spanning is a core activity for health sciences librarians. To be effective, librarians must bridge internal silos and reach across borders to partner with other disciplines, groups, and organizations. Common sense strategies and practical implementation steps can help librarians to earn a reputation as a trustworthy and effective partner.

The Multiple Dimensions of Expanded Access to Health Information: Don Lindberg and the U.S. National Library of Medicine.

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.

The U.S. National Library of Medicine and Standards for Electronic Health Records: One Thing Led to Another.

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.

Something New and Different: The Unified Medical Language System.

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.

Grateful Med: Direct Access to MEDLINE for Health Professionals with Personal Computers.

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.

UMLS users and uses: a current overview.

The US National Library of Medicine regularly collects summary data on direct use of Unified Medical Language System (UMLS) resources. The summary data sources include UMLS user registration data, required annual reports submitted by registered users, and statistics on downloads and application programming interface calls. In 2019, the National Library of Medicine analyzed the summary data on 2018 UMLS use. The library also conducted a scoping review of the literature to provide additional intelligence about the research uses of UMLS as input to a planned 2020 review of UMLS production methods and priorities. 5043 direct users of UMLS data and tools downloaded 4402 copies of the UMLS resources and issued 66 130 951 UMLS application programming interface requests in 2018. The annual reports and the scoping review results agree that the primary UMLS uses are to process and interpret text and facilitate mapping or linking between terminologies. These uses align with the original stated purpose of the UMLS.

Building better connections: the National Library of Medicine and public health.

PURPOSE: The paper describes the expansion of the public health programs and services of the National Library of Medicine (NLM) in the 1990s and provides the context in which NLM's public health outreach programs arose and exist today. BRIEF DESCRIPTION: Although NLM has always had collections and services relevant to public health, the US public health workforce made relatively little use of the library's information services and programs in the twentieth century. In the 1990s, intensified emphases on outreach to health professionals, building national information infrastructure, and promoting health data standards provided NLM with new opportunities to reach the public health community. A seminal conference cosponsored by NLM in 1995 produced an agenda for improving public health access to and use of advanced information technology and electronic information services. NLM actively pursued this agenda by developing new services and outreach programs and promoting public health informatics initiatives. METHOD: Historical analysis is presented. RESULTS/OUTCOME: NLM took advantage of a propitious environment to increase visibility and understanding of public health information challenges and opportunities. The library helped create partnerships that produced new information services, outreach initiatives, informatics innovations, and health data policies that benefit the public health workforce and the diverse populations it serves.

Integrating intimate partner violence assessment and intervention into healthcare in the United States: a systems approach.

The Institute of Medicine, United States Preventive Services Task Force (USPSTF), and national healthcare organizations recommend screening and counseling for intimate partner violence (IPV) within the US healthcare setting. The Affordable Care Act includes screening and brief counseling for IPV as part of required free preventive services for women. Thus, IPV screening and counseling must be implemented safely and effectively throughout the healthcare delivery system. Health professional education is one strategy for increasing screening and counseling in healthcare settings, but studies on improving screening and counseling for other health conditions highlight the critical role of making changes within the healthcare delivery system to drive desired improvements in clinician screening practices and health outcomes. This article outlines a systems approach to the implementation of IPV screening and counseling, with a focus on integrated health and advocacy service delivery to support identification and interventions, use of electronic health record (EHR) tools, and cross-sector partnerships. Practice and policy recommendations include (1) ensuring staff and clinician training in effective, client-centered IPV assessment that connects patients to support and services regardless of disclosure; (2) supporting enhancement of EHRs to prompt appropriate clinical care for IPV and facilitate capturing more detailed and standardized IPV data; and (3) integrating IPV care into quality and meaningful use measures. Research directions include studies across various health settings and populations, development of quality measures and patient-centered outcomes, and tests of multilevel approaches to improve the uptake and consistent implementation of evidence-informed IPV screening and counseling guidelines.

Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study.

OBJECTIVE: This study informs efforts to improve the discoverability of and access to biomedical datasets by providing a preliminary estimate of the number and type of datasets generated annually by research funded by the U.S. National Institutes of Health (NIH). It focuses on those datasets that are "invisible" or not deposited in a known repository. METHODS: We analyzed NIH-funded journal articles that were published in 2011, cited in PubMed and deposited in PubMed Central (PMC) to identify those that indicate data were submitted to a known repository. After excluding those articles, we analyzed a random sample of the remaining articles to estimate how many and what types of invisible datasets were used in each article. RESULTS: About 12% of the articles explicitly mention deposition of datasets in recognized repositories, leaving 88% that are invisible datasets. Among articles with invisible datasets, we found an average of 2.9 to 3.4 datasets, suggesting there were approximately 200,000 to 235,000 invisible datasets generated from NIH-funded research published in 2011. Approximately 87% of the invisible datasets consist of data newly collected for the research reported; 13% reflect reuse of existing data. More than 50% of the datasets were derived from live human or non-human animal subjects. CONCLUSION: In addition to providing a rough estimate of the total number of datasets produced per year by NIH-funded researchers, this study identifies additional issues that must be addressed to improve the discoverability of and access to biomedical research data: the definition of a "dataset," determination of which (if any) data are valuable for archiving and preservation, and better methods for estimating the number of datasets of interest. Lack of consensus amongst annotators about the number of datasets in a given article reinforces the need for a principled way of thinking about how to identify and characterize biomedical datasets.

"You have to be there": twenty-five years of SCAMC/AMIA symposia.

The AMIA Annual Symposium began life as the Symposium on Computer Applications in Medical Care (SCAMC) in 1977. Inaugurated as a multidisciplinary meeting with multiple sponsors, the Symposium quickly became a force in the development of the field of medical informatics. The authors summarize the 25-year history of the meeting and its proceedings, drawing on information in the printed programs and proceedings and on the personal recollections of some Symposium organizers and attendees. They also present the results of a study of the extent to which Symposium papers have been cited in the journal literature.

A consensus action agenda for achieving the national health information infrastructure.

BACKGROUND: Improving the safety, quality, and efficiency of health care will require immediate and ubiquitous access to complete patient information and decision support provided through a National Health Information Infrastructure (NHII). METHODS: To help define the action steps needed to achieve an NHII, the U.S. Department of Health and Human Services sponsored a national consensus conference in July 2003. RESULTS: Attendees favored a public-private coordination group to guide NHII activities, provide education, share resources, and monitor relevant metrics to mark progress. They identified financial incentives, health information standards, and overcoming a few important legal obstacles as key NHII enablers. Community and regional implementation projects, including consumer access to a personal health record, were seen as necessary to demonstrate comprehensive functional systems that can serve as models for the entire nation. Finally, the participants identified the need for increased funding for research on the impact of health information technology on patient safety and quality of care. Individuals, organizations, and federal agencies are using these consensus recommendations to guide NHII efforts.

Achieving "source transparency" in the UMLS Metathesaurus.

The UMLS Metathesaurus is a syntactically uniform, concept-based, semantically enhanced representation of many of the world's authoritative biomedical vocabularies. Released several times a year, the Metathesaurus is becoming a common, longitudinally maintained source of the current versions of these vocabularies. As vocabularies become standards for reimbursement, reporting, interoperation, and use by applications, the vocabulary obtained from the Metathesaurus must be consistent with that obtainable from each vocabulary's authority. Effective with the first 2004 release, the Metathesaurus represents new and updated sources "transparently"--both users and applications are able to "see" each vocabulary in the Metathesaurus without any of the small losses of information introduced by abstractions used in previous versions. Thus, the Metathesaurus can continue to provide its many semantic and lexical value-added features while guaranteeing that original sources will be "visible" in intact form. Vocabulary users and application developers will benefit from the enhancements and economies of scale offered by the Metathesaurus, while preserving distinctions between content provided by external authorities and content added as part of the Metathesaurus development and maintenance process.