“Yes, the need for timely, accurate, and reliable data required to manage widespread public health emergencies has never been greater,” say Dean F. Sittig and Hardeep Singh. “We need a national information system to enable health officials to answer critical questions. For instance, it has been hard to pinpoint how many Covid-19 patients are in a given geographic area, their age, and race; how many are hospitalized; and how many are in intensive care, on ventilators, or have died.”
In an attempt to get answers, Vice President Mike Pence requested hospitals report key Covid-19 information, such as the daily number of Covid-19 patients, in an Excel file sent via e-mail to the Department of Health and Human Services. As one of the most technologically advanced societies in the world that spends the most money by far on health care, the U.S. needs more novel solutions than email for gathering data at a national level.
In 2001, an effort was made to design a national health information infrastructure—a knowledge-based system capable of providing critical information to make sound decisions in emergency situations. However, this vision was never operationalized. Creating such a virtual backbone is foundational to the health of the nation.
A key question is whether the Covid-19 crisis will change our expectations for privacy, confidentiality, continuous monitoring of our location and activity, and strategic but focused government intervention. Essential information needed by the White House Coronavirus Task Force is only possible through widespread data collection, aggregation, and analysis. This comes with a price, not only in terms of dollars but also in terms of trade-offs that involve significant changes to the nation’s existing health information technology and legal infrastructure to gather and analyze data. The vast majority of these changes are technically possible, but currently illegal or socially unacceptable.
For instance, over 95% of hospitals use electronic health records (EHRs) to manage the care of patients now, so the timing for the creation of a real-time data collection infrastructure is perfect. In addition, many existing state or regional health information exchanges facilitate the collection, exchange, and analysis of clinical and administrative data between care providers.
We will need to change our current rules, regulations, and social norms to enable robust information capture. The government-driven surveillance and intervention that would be required seems impossible in our modern and open society that prides itself on personal privacy and choice. To maintain adequate trust, the most intrusive functions of a data-collection system could be limited to public health emergencies, and governed by a bipartisan public-private consortium that includes respected academics and members of the public. By keeping a sharp focus on maximizing benefits, treating everyone equally, and prioritizing efforts to save lives while maintaining trust and confidentiality, such a system would meet the highest ethical standards.
We should no longer rely on outdated laws, social norms, or potentially inaccurate modalities to obtain health information essential to save lives.
In This Issue
The Viewpoint article “Covid-19 and the Need for a National Health Information Technology Infrastructure,” co-authored by Dean F. Sittig, Ph.D., and Hardeep Singh, M.D., MPH, was published in JAMA on May 28, 2020. Sittig is a professor in the School of Biomedical Informatics at the University of Texas Health Science Center at Houston. Singh is chief of the Health Policy, Quality, and Informatics Program at Center for Innovations in Quality, Effectiveness and Safety (IQuESt) at the Michael E. DeBakey VA Medical Center, and a professor of medicine at Baylor College of Medicine.
The views expressed here are those of the authors and do not necessarily represent those of the University of Texas Health Science Center at Houston or the Department of Veterans Affairs.
About Health Policy Research
Health Policy Research presents a summary of findings on current health policy issues. It is provided by Vivian Ho, Ph.D., the James A. Baker III Institute Chair in Health Economics at Rice University’s Baker Institute for Public Policy, in collaboration with Laura Petersen, M.D., MPH, chief of the Section of Health Services Research in the Department of Medicine at Baylor College of Medicine.
This publication aims to make research results accessible to regional and national health policymakers. The views expressed herein are those of the study authors and do not necessarily represent those of the Baker Institute or of Baylor College of Medicine.
The Baker Institute and Baylor College of Medicine’s Section of Health Services Research work with scholars from across Rice University and Baylor College of Medicine to address issues of health care — access, financing, organization, delivery and outcomes. Special emphasis is given to issues of health care quality and cost.
