National Academy of Medicine

Data Acquisition, Curation, and Use For a Continuously Learning Health System: A Vital Direction for Health and Health Care

By Harlan M. Krumholz, Philip E. Bourne, Richard E. Kuntz, Harold L. Paz, Sharon F. Terry, and Joanne Waldstreicher
September 19, 2016 | Discussion Paper
About the Vital Directions for Health and Health Care Series

Vital DirectionsThis publication is part of the National Academy of Medicine’s Vital Directions for Health and Health Care Initiative, which called on more than 100 leading researchers, scientists, and policy makers from across the United States to provide expert guidance in 19 priority focus areas for U.S. health policy. The views presented in this publication and others in the series are those of the authors and do not represent formal consensus positions of the NAM, the National Academies of Sciences, Engineering, and Medicine, or the authors’ organizations.
Learn more: nam.edu/VitalDirections

Increased sharing of health data among all stakeholders in the health system—from patients and advocates to health professionals and medical researchers—is essential for creating a learning health system. Such a system would leverage health data from a variety of sources to meet the challenges of increasingly complex medical decisions and, in the process, create knowledge more efficiently in the service of producing better patient outcomes and less waste. Government agencies, nongovernment organizations (including charitable foundations and disease advocacy organizations), and the research community have taken important strides in recent years toward greater openness of research data and personal health data. In particular, there is increasing movement toward clarifying people’s rights to their own health data, promoting standards to ease their access, and providing tools that enable them to exercise their rights. Major challenges remain, however, in overcoming the resistance to data-sharing that prevents scientists from learning about clinical trials whose results are unpublished and prevents other people from acquiring and sharing their own health-related data. Those challenges create a need for incentives (financial and otherwise) to create an open-data culture, for changes in laws and regulations to make data-sharing easier, for improvement in the infrastructure used for data-sharing, and for investment in research to increase data-sharing abilities. Policies promoting a more open system should be evaluated to quantify the transition to a data-sharing ecosystem and the opportunities to improve its effectiveness in promoting clinical quality, patient choice, and scientific progress. Given the scale of the challenges and the potential rewards, a strategic federal initiative that aligns current and future efforts would be one way to accelerate movement toward a more open, people-centric health system with data-sharing at its core. Read more >>

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Disclaimer: The views expressed in this paper are those of the authors and not necessarily of the authors’ organizations, the National Academy of Medicine (NAM), or the National Academies of Sciences, Engineering, and Medicine (the National Academies). The paper is intended to help inform and stimulate discussion. It is not a report of the NAM or the National Academies. Copyright by the National Academy of Sciences. All rights reserved.