Guest post by Teresa Zayas Cabán, PhD, Assistant Director for Policy Development at the National Library of Medicine (NLM), National Institutes of Health (NIH).
Scientific discovery and innovation depend on access to data. In its nearly 200-year existence, NLM has advanced biomedicine and public health by acquiring, organizing, preserving, and disseminating knowledge that is essential to research, medicine, and health. But the basis for this knowledge isn’t just the books and journals—it’s the data and information that forms the foundation for those resources.
And increasingly, those data are digital. They can come from observations made during clinical interactions and recorded in electronic health record systems, medical monitoring devices such as pacemakers, and even smart watches and other wearable technologies. Because of the various sources of data that support biomedical research, it can come in different forms with varying structures.
NLM’s Strategic Plan 2017–2027 advocates for and prioritizes the advancement of open science by democratizing access to the products and processes of scientific research by making them widely accessible. We are also committed to helping develop and implement policies and practices that facilitate open science and data-driven research.
Science and Health Care Data Sharing Policy
Both science policy and health care policy are increasingly important for NIH and NLM to achieve these data science and open science goals. NIH has prioritized providing access to findings from federally funded research as data sharing is essential to the translation of research resources into knowledge, products, and procedures to improve human health.
At NLM, we assist in the development and implementation of relevant NIH policies related to research and genomic data sharing, clinical trial registration and results information sharing, and public access to facilitate open science practices consistent with ethical considerations.
For these policies to reach their goals, we must ensure information being shared and used for research is useful to the scientists, researchers, health care professionals, and members of the public who use it. The answer lies in interoperability.
What is interoperability, and how does NLM support it?
Interoperability is the ability for computerized information systems to communicate with each other using a common language that any of them can understand. Standards are integral to interoperability and can specify how to collect, store, interpret, share, and aggregate data securely and efficiently. Data, metadata, and exchange standards are integral to the success of NIH’s data sharing science policies and activities. Researchers further benefit from standards used in clinical information systems as their use facilitates data aggregation, analysis, and dissemination.
As such, NLM coordinates and collaborates on relevant efforts to advance interoperability of research data by using standards required in health information technology regulation. For example, with the NIH Office of Data Science Strategy and Office of the National Coordinator for Health Information Technology to develop guidance that encourages use of the HL7® Fast Healthcare Interoperability Resources (or FHIR®) specification and the United States Core Data for Interoperability in research.
Advancing data science and open science
The amount of health, clinical, and biomedical data grows every day, and we must both keep pace with its volume and complexity and make all that data interoperable and findable, accessible, interoperable, and reusable (also known as FAIR).
Advancing interoperability of biomedical data also supports open science. Open science principles form the foundation of NLM’s products and services—our tools—including PubMed, our database of citations to biomedical literature, and PubMed Central, our full-text literature archive. They are also the basis of our many molecular databases such as the Sequence Read Archive and GenBank.
What’s next for NLM and interoperability?
Setting the standards for a shared language supports the effective exchange of information and is central to research, health care, and public health. Adoption and use of relevant standards directly strengthens our commitment to open science and improves the quality of data needed for and resulting from biomedical research.
So what’s next? NLM continues to expand its work to accelerate scientific discovery, so we will continue to engage with NIH-wide Institutes and Centers, with agencies across the federal government, and with other stakeholders to support policies that advance research and health care by integrating data in a useable, understandable, and—most importantly—actionable ways.
NLM is steadfast in its support of policies that support interoperability through the use of standards to improve the quality of data for health care and biomedical research. Let us know how our efforts have changed your own practices!
Teresa Zayas Cabán, PhDAssistant Director for Policy Development, NLM
In her role at NLM, Dr. Zayas Cabán leads policy development and implementation activities that promote access to scientific data and information, as well as more widespread use of health data standards. Prior to joining NLM, Dr. Zayas Cabán was Chief Scientist at the Office of the National Coordinator for Health Information Technology (ONC), where she developed, established, and recommended scientific policy to the National Coordinator, directed ONC’s Precision Medicine Initiative activities, and provided oversight of ONC’s patient-centered outcomes research projects. She obtained her doctorate in industrial and systems engineering at the University of Wisconsin–Madison, where she was a National Science Foundation research fellow in industrial engineering. She also served as a post-doctoral trainee in the computation and informatics in biology and medicine program at the University of Wisconsin–Madison.