Data ownership has long been a question in healthcare, even more so now with interoperability concerns and patients becoming more engaged in their healthcare. Should healthcare organizations own that data, or does it belong to the patient? In a piece in San Diego Magazine, Eric Topol, MD, director of the Scripps Translational Science Institute and chief academic officer of Scripps Health in La Jolla, Calif., says cybersecurity concerns and the rise of patient-generated data make the case for patient-owned data.
Dr. Topol writes the growing number of healthcare data breaches at hospitals and health systems indicates they are a target for hackers, as they hold vast amounts of patient data. Tie that to the amount of medical data being patient-driven, and Mr. Topol says the case for healthcare organizations owning the data becomes less clear.
"We are moving to 'big data' at the individual level with no place to store, no less analyze, such information," he writes. "With all these moving parts, we need a solution to preserve the privacy and security of this precious data while at the same time accommodating and integrating its new production path."
While patients do have access to patient portals, Dr. Topol writes just "a small fraction" of Americans use such portals to access their records. A January report from athenahealth found 37 percent of patients have access to their records.
Dr. Topol suggests amending HIPAA, which he says has become too outdated. Second, he says a technological fix is needed, a place to store medical data owned by the individual. Blockchain, he writes, is one potential example where a person's medical data is continually updated, and the person can control access to it.
"Let's hope some important legislative action and technology solutions come together to enable what is an inevitable civil right — owning your medical data," Dr. Topol writes.
More aticles on health IT:
Boston Children's 2014 hacker explains why he did it
The best, worst states for EHR adoption, HIE, interoperability: 4 findings from ONC
FBI urges ransomware victims to report attacks to federal law enforcement