“I hear this a lot about modernizing HIPAA, but no one actually gives a recommendation for what they would do,” said Valerie Montgomery Rice, MD, president and dean of the Morehouse School of Medicine in Atlanta, according to Fortune. “If we had a magical wand, what would we do tomorrow?”
Although most patient data is incredibly valuable to healthcare providers who use it to deliver targeted care or develop life-saving treatments, it’s equally as personal to the patient. A hack of their data could result in identity theft or fraud, particularly since patients’ protected health information is worth five times as much as financial or other data on the dark web, said Eric Topol, MD, director of the Scripps Translational Science Institute
CEO of the Healthcare Information and Management Systems Society Hal Wolf said there are three pillars surrounding the data issue — ownership, access and usage.
“It’s a delicate balance,” Mr. Wolf said, according to Fortune. “From a physician standpoint, you cannot do your job unless you have access to as much of the data as is available … anything that limits that access literally puts patients at risk … We have to be very mindful of aggregated information and access to it in order to support the research side. If we fail to do that we will not continue the advancements that are happening right now at lightning speed.”
But that begs the question: Should patients own their data? Not everyone is comfortable with this idea, arguing patients may not be medically literate enough or fully understand the consent issues with sharing research-essential data. Some patients may even hide select data from their caregivers.
Dr. Topol added that the industry is also experiencing “information blocking” as providers don’t want to share their patients’ data with others, fearing they’d lose those patients’ business. The government has been slow to respond, in part because its been difficult get various agencies such as the FDA, CMS and CDC to agree on on what constitutes information blocking, HHS Chief Data Officer Mona Siddiqui, MD, said.
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