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.
As humans expand our geographic reach, encroach on untouched natural territories, and interact more with animal populations, we will encounter novel zoonotic diseases that threaten the human body. The sooner we act to address these risks, the better.
This report serves as a landscape assessment and toolbox from which local governments can negotiate an informed position when it comes to the levers available to them and includes a first-of-its kind analysis of eight executed community benefits agreements.
When a hurricane hits, it’s all hands on deck – that goes for federal data, too. Pulling back from our investments in timely, accurate, and accessible public data will only make us less prepared and put us all at greater risk.
This is bigger than a singular elimination of race and ethnicity questions. It could accelerate the second wave of widespread reductions to demographic data, leaving public health officials with even less information to deliver better health outcomes for all Americans.