HIPAA guarantees patients the right to receive a complete copy of their medical record from providers. But you wouldn't know it from the way most hospitals manage records requests.
Patients face substantial barriers when requesting their records from hospitals, according to a recent study conducted at the Yale University School of Medicine and published in JAMA Friday morning. Only 53% of the 88 hospitals surveyed even had a form available to request the entire record—the rest offered only partial records unless the patient made a phone call and verbal request.
"For patients who may not necessarily know that they have that right, they just don't know that they can request their entire medical record," Carolyn Lye, the lead author of the study and a medical student at Yale, told FierceHealthcare.
This turned out to be a confusing and convoluted process, as Lye found out directly. For the study, she posed as a patient calling the 83 top-ranked hospitals in the country asking to receive a copy of her records. The responses she got were far from uniform.
Sometimes the "complete record" hospitals delivered didn't include nursing notes, so Lye had to specifically request those as well. And in more than one case, a hospital staff member actually told Lye it would be a HIPAA violation to provide her record in the medium requested, leaving it up to Lye to correct them on the letter of the law.
"Some of the hospitals wouldn't release records over certain formats such as email, citing that it was an insecure method of releasing records that would be like a violation of HIPAA, a violation of privacy. And that's simply not true," Lye said. "Hospitals should be able to send records via email or via any sort of format that patients would want, as long as it's readily producible in that format.
Although medical records are often maintained online, hospitals varied greatly in their protocol for sharing them. Many hospitals had no process for delivering records in digital form (despite HIPAA requiring them to). And when delivering paper requests, hospitals often charge patients per page.
“When you go up to as much as $500 for a 200-page record—first of all 200 pages is not a long record in today's world … and $500 is a lot--most Americans can't afford it," said Harlan Krumholz, M.D., the Yale professor who coordinated the study.
"It's not the kind of discretionary money you have laying around, particularly for a medical record. The law says you're entitled to all your digital data in the format of your request—without pages charges. But right now, I think hospitals aren't focused on complying with that regulation."
The status quo is understandable, though not acceptable, said Krumholz. It's expensive to share records. Some hospitals still have basements filled with file boxes to store records, so a request for a copy means going down and physically excavating it.
Digital access could simplify the process, but as Krumholz noted, hospitals still haven't adopted a culture of sharing records and haven't created a uniform procedure for disseminating digital records. Part of that, Krumholz said, is that once a hospital does establish a procedure for sharing records, it also needs a procedure for correcting the records—yet another administrative burden.
"In essence, we're stuck in an old age," he said. "Technology and the way that we do record-keeping now has transformed tremendously in the last decade. But medical record rooms are still largely anchored in an old model. And maybe in a model where people didn't ask for their records very often or didn't use to—I don't know. But it's time to catch up."