For U.S. patients, access to medical records often difficult and costly

(Reuters Health) - Getting access to your own medical records might be a lot harder than you think, a new study suggests. Even the top-ranked U.S. hospitals can make records requests arduous, according to the study published in JAMA Network Open.

“This study quantified the everyday experience of many Americans trying to get access to personal health information from a hospital,” said senior author Dr. Harlan Krumholz, director of the Center for Outcomes Research and Evaluation at the Yale New Haven Hospital in Connecticut. “The law is very clear. People have a right to their data. They have a right to digital data without per page charges. Our study revealed that even at the very best places, there was inconvenience, delay and often high cost.”

Krumholz decided to do the study after a frustrating experience trying to get medical records for a family member. Focusing on 86 hospitals ranked best in the country by US News and World Report, Krumholz figured he’d see what the best-case scenario was for patients. It was eye-opening.

He asked a medical student, Carolyn Lye, who is lead author on the new study, to call records departments at the 86 hospitals. The plan was for her to say she was looking for the medical records for her grandmother who had been treated at the hospital and to ask what was involved in getting them: What was the procedure? What was available? How long would it take? How much would it cost?

Of the 86 hospitals she called over a four-month period in 2017, 83 were reachable by phone. After five attempts to call the other three, the researchers gave up; these were the hospitals affiliated with Indiana University, Northwestern University and the University of Colorado.

The researchers often found disagreement between forms to request information and what was said over the phone. On the forms, just 44 out of 83 hospitals gave patients the option of getting their entire medical record, while all hospitals that could be reached by phone offered the entire medical record.

When it came to costs for the records, 29 hospitals disclosed exact costs on the request form or on their webpage. One hospital offered to provide records free of charge, 18 indicated there would be a charge, but how much it would be was not specified, and 36 did not specify whether there would be fees. Costs cited on forms or websites ranged between $0.00 and $281.54.

During phone calls, 82 hospitals disclosed the cost for getting paper records and one could not provide that information because a third party did the billing. One hospital’s charges went as high as $541.50. “That $500 means most Americans would be precluded from paying for that record,” Krumholz said.

Krumholz calls for more standardized access to medical records. “But we don’t need to lobby legislators in Washington for this,” he said. “The law is clear. We need to get health systems in compliance with the law.”

The new findings are “striking,” said Dr. G. Caleb Alexander, an internist and associate professor of medicine at the Johns Hopkins Bloomberg School of Public Health. “But they may be less so to (anyone) trying to obtain their own medical records. Many of us have gone through this process.”

And while “it’s forgivable to find some variation across hospitals, what’s more concerning is to think that a patient might face a bill of $500,” Alexander said. “Patients are entitled to know what is in their medical records. And unfettered access should be at a minimal cost.”

SOURCE: JAMA Network Open, online October 5, 2018.