Many top hospitals in the United States are making it unduly confusing or expensive for patients to gain access to their own medical records, say researchers at Yale. Their study appeared on October 5 in JAMA Network Open.

Since the Health Insurance Portability and Accountability Act (HIPAA) of 1996, federal law has guaranteed patients access to their protected health information in a timely manner, in a patient’s preferred format, and at a reasonably low processing fee. In order to assess adherence to these guidelines, a team of researchers at Yale conducted scripted interviews with the medical records departments of 83 top-ranked US hospitals across 29 states.

“There were overwhelming inconsistencies in information relayed to patients regarding the personal health information they are allowed to request, as well as the formats and costs of release, both within institutions and across institutions,” said Carolyn Lye, first author on the study and a student at the Yale School of Medicine. “We also found considerable noncompliance with state and federal regulations and recommendations with respect to the costs and processing times associated with providing access to medical records.”

On their record request forms, only 53% of the hospitals indicated an option for patients to acquire their full medical record; however, when asked over the telephone, all 83 hospitals stated that they were able to release entire medical records to patients. Also, as Lye indicated, the team found discrepancies between the information hospitals provided over the phone vs on their request forms about the possible formats (ie, electronic, paper, in person) in which patients could request their records to be released, thus violating the federal regulation that hospitals must provide the medical record in whatever format a patient prefers. Finally, the researchers found that 58% of the hospitals had costs for releasing the records that were above the federal recommendation of $6.50 for medical records housed electronically, with one hospital charging as much as $541.50 for a 200-page record.

“Stricter enforcement of the patients’ right of access under HIPAA is necessary to ensure that the medical records request process across hospitals is easy to navigate, timely, and affordable,” said Lye. “We are also in an era in which patients are participants in their own health care. Inhibiting access for patients to their own medical records with complicated, lengthy, and costly request processes prevents patients from obtaining information that they may need to better understand their medical conditions and communicate with their physicians.”