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Policy—and its cousin, legislation—make the world go ‘round. They lay out a course of action, guide decisions, and set the parameters for future choices. While policies and legislation are being crafted, it’s a tug of war between details and context, minutiae and meaning, big picture and nuance, with that push and pull yielding documents that govern actions for years, often for decades if not longer.
So much of what we do here at NLM originates in and builds upon policy and legislation. As an agency of the Federal Government, NLM’s authorities are prescribed by law. The National Library of Medicine Act of 1956 defined not only our name but also our mission, key functions, and the size and composition of our Board of Regents. Over the following 40 years, additional legislation created structures and responsibilities within NLM, including the Lister Hill National Center for Biomedical Communications, the National Center for Biotechnology Information, and the National Information Center on Health Services Research and Health Care Technology. A 1965 law authorized NLM to issue grants, leading to the development of NLM’s extramural programs and the National Network of Libraries of Medicine, while legislation in 1997 and 2007 laid the foundation for the ClinicalTrials.gov registry and expanded it to include results reporting.
Policy and legislation also shape the way NLM implements its programs and services. Copyright law, for example, governs the ways we disseminate journal information via PubMed, interlibrary loan, and our on-site services. The NIH Public Access Policy, which implements a part of the Omnibus Appropriations Act of 2009, helps populate NLM’s PubMed Central archive of full-text biomedical literature by requiring the deposit of articles resulting from NIH-funded research. Regulations issued by the Office of the National Coordinator for Health Information Technology within the Department of Health and Human Services (HHS) mandate the use of NLM-supported terminologies – SNOMED, LOINC, and RxNorm—in certified electronic health records.
Because of the interplay between policy, legislation, and NLM programs and services, NLM is often called upon to provide advice to Congress and the Executive branch. We commission important national studies of policy issues, such as the potential health uses of high-performance computing and strategies to forecast and manage the rising costs of data sustainability. We participate in trans-NIH and interagency working groups and committees, national round tables, and international organizations that focus on scientific communication and trans-national data management. We also communicate with stakeholder groups with similar missions and interests, such as the Medical Library Association, the Association of Academic Health Sciences Libraries, and the American Medical Informatics Association.
Given the numerous policy issues that touch NLM, we must engage judiciously, focusing on issues with high importance to NLM and the opportunity to make a difference. Because of the broad range of NLM services, we can often bring a unique, data-driven perspective that informs policy debates and helps resolve bottlenecks. Among the policy issues most relevant to NLM are those addressing:
- Open Science, Open Data, Public Access, Data Science, Data Management and Data Sharing
- Copyright and Licensing
- Data Privacy and Protections
- Federal Websites, Information Technology, Health Information Technology
- Net Neutrality, Internet, and Artificial Intelligence
- Clinical Trials, Genomics, Biomedical Science, and Research
- Federal Government Operations
NLM has a core policy team with senior level experience in policy development and implementation. The team works closely with staff from every office and division within the Library, a collaboration critical to moving NLM’s mission forward and ensuring its views are represented in relevant policy efforts.
Currently, NLM’s policy team is helping NIH form and implement significant science policies. These include policies regarding data management and data sharing, such as the NIH Genomic Data Sharing Policy, and others related to clinical trials, such as the HHS Final Rule on Clinical Trials Registration and Results Information Submission and the NIH Policy on Dissemination of NIH-Funded Clinical Trial Information. The policy team also provides policy expertise in many NLM and NIH-wide initiatives, such as the NLM Strategic Plan 2017-2027, the NIH Strategic Plan for Data Science, and other open science and data science-related activities.
It’s essential work, crucial to our future, but too often overlooked in the day-to-day—which is why we focused our latest staff Town Hall on it and why I highlighted the policy team’s work here. Their efforts in the public policy arena help NLM fulfill its mission to translate biomedical research into practice and lay the foundation for the data-driven discovery that will shape our future. In other words, they make our world go ‘round. I wouldn’t have it any other way.
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Co-authors (left to right):
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- Jerry Sheehan, NLM Deputy Director
- Dina Paltoo, PhD, MPH, NLM Assistant Director for Policy Development
- Rebecca Goodwin, JD, Policy Analyst & Open Science Specialist, Office of Strategic Initiatives
- Patricia Flatley Brennan, RN, PhD, NLM Director