JASON Views Challenges of Electronic Health Data
The ongoing transition to electronic storage of individual health information was examined in a newly released study from the JASON scientific advisory panel.
“The two overarching goals of moving to the electronic exchange of health information are improved health care and lower health care costs. Whether either, or both, of these goals can be achieved remains to be seen, and the challenges are immense,” the JASON study says.
See A Robust Health Data Infrastructure, prepared for the Department of Health and Human Services, November 2013 (approved for release April 2014).
The JASON study addresses the tension between personal health information, which is “sensitive and therefore must be carefully safeguarded,” and aggregated population health data, which are “a highly valuable, and largely untapped, resource for basic and clinical research.”
“It is in the public interest to make such [aggregated population] information available for scientific, medical, and economic purposes.” Reconciling these competing imperatives of privacy and information sharing is one of the challenges to be overcome.
The JASONs, who normally deal with defense science and technology, strain to affirm a relationship between health and national security. (“From a national security perspective it is important to have an accurate assessment of the current health and potential health vulnerabilities of the population.”)
Interestingly, they suggest that because the United States is less ethnically homogenous than many other countries, it “has a special advantage” in conducting certain types of medical research.
The U.S. “is a genetic melting pot that can be a crucible for discoveries related to personalized medicine and the genetic basis of disease,” the JASONs said.
The strength of our nation’s data policy isn’t just in the rules we write, but in how effectively we translate those rules into a system that prioritizes the public good. Join us in this movement to design and build more resilient national data policies.
The human cost is measured in deaths. The financial cost is measured in the $52 billion taxpayers pay annually end stage renal disease – double NASA’s budget.
Gilman Louie, Longest Serving Board Chair of the Federation of American Scientists, Named Chair Emeritus
The proposed Office will resurrect the long-closed Office of Technology Assessment (OTA), the archive of which has been maintained by FAS for decades at https://ota.fas.org/.