For more than two years, Lucia Savage served as the chief privacy officer at the Office of the National Coordinator for Health IT helping consumers understand their right to obtain their medical record.
But even someone with detailed knowledge of federal laws governing patient access to health data has trouble getting a copy of her medical records, as Savage detailed in a first-person account published in the Journal of AHIMA.
Savage, who is now the chief privacy and regulatory officer at Omada Health, recounted two separate incidents in which she was unable to obtain her medical information despite a complaint to the Office for Civil Rights and repeated calls to her insurance company and various providers. In one example, Savage waited six months before she received the 12 pages of personal health information she had requested from her insurance carrier to contest an unpaid claim. In another, Savage “begged and pleaded” for her records to fulfill a request from a life insurance carrier.
Savage wrote that her own experience illustrates the shortcomings of federal laws—including an information blocking provision within the 21st Century Cures Act.
I am trying to be optimistic, but as long as patients have to send paper forms to document rooms that lose the forms, it is hard: https://t.co/bQkRaHCvef— Lucia Savage (@SavageLucia) November 10, 2017
“Now working as the chief privacy officer for a covered entity, I am sympathetic to the need to keep track of what PHI is going out the door, to whom, and for what purpose,” she wrote. “In 2017, however, there are so many better ways to do that without wasted time, stamps, mail, faded paper forms, and lost correspondence.”
Patient access to medical records is still a critical challenge across healthcare. A GAO report earlier this year showed just 15% of patients access their medical information electronically in part because users say it takes too much time to set up and navigate patient portals.
Rooting out information blocking is a unique challenge for agencies like ONC, which is tasked with establishing a definition for information blocking. That definition will be used by the Office of Inspector General for enforcement, but ONC officials have declined to provide a timeline for completing that work.