Eric Wang

For Carolyn Lye MED ’20, requesting medical records is a simple process. Health professionals and students like Lye are healthy, experienced and, most importantly, knowledgeable of their rights to their information. But when ordinary patients want to obtain their health data, they can face a great deal of difficulty.

According to a new study published on Oct. 5 in the journal JAMA Network Open, this inaccessibility prevents patients in the vast majority of top U.S. hospitals from getting the care that they need.

“We can’t continue the paternalistic system where we treat patients as children and shield them from information,” said Harlan Krumholz ’80, professor at the School of Medicine and co-author of the study. “We have to ensure that patients get the same access to information as other health care professionals, because it’s about them.”

First author Lye called the top 83 hospitals in the country to ask about obtaining the medical records for her fictional grandmother. Not only did the majority of hospitals fail to disclose accurate information about the retrieval process, but also only a handful were fully compliant with the governmental regulations surrounding this process.

According to Lye, Yale New Haven Hospital was among those listed as noncompliant.

Though the state requirement for request processing times is 30 days, the hospital told Lye that it would take upward of 46 days to obtain health data — well over the legal maximum.

However, Chief Medical Information Officer of Yale New Haven Hospital and the Yale School of Medicine Allen Hsiao argued that the hospital does comply with the state requirement — rather, the phone operator provided the wrong timeline. Hsiao also co-authored the paper.

“The information inaccurately given to [Lye] was that … it may take over 30 days. This is actually not true,” Hsiao said. “Yale New Haven Hospital actually is very good about getting records to patients in a timely fashion.”

According to Hsiao, employees from an outside company, which Yale contracts to handle calls during busy periods, supplied the wrong timeline to Lye. Since then, Hsiao said, the hospital has since ensured that the company has the correct information.

“That’s something that our information management leadership have already addressed and talked to all the folks answering the phone is [to] make it clear that it will not take more than 30 days,” Hsiao said. “That was a learning experience for us so that we ourselves can eliminate that barrier.”

In reality, according to Hsiao, the average time it takes for Yale New Haven Hospital to fulfill a records request is 10 days.

The study also presented several other areas for improvement for hospitals throughout the country.

While the federal government has recommendations in place for the fees hospitals can charge patients to access their data, only a little more than half of the 83 top hospitals actually follow them, according to the study.

On forms authorizing the release of medical information, 29 hospitals disclosed the price of obtaining the records, which ranged in price from $0 to over $500 for the same document. Only nine of these hospitals charged fees consistent with what was stated over the phone.

According to Lye, without uniformity in pricing, format and timing of medical records requests, patients are not able to participate as freely in their health care decision-making. This can also prevent physicians from obtaining all of the medical information necessary to ensure their patients’ recovery.

“It’s in everybody’s interest to have more access to your own health records,” said Howard Forman, a radiology and biomedical imaging professor at the Yale Medical School and co-author of the study. “It improves your ability to get a second opinion, [and] it improves the ability to control and understand issues related to your health care. All of these things benefit from better access to your own medical records.”

Since the study was based on information obtained from phone calls with the hospitals, similar efforts are needed to establish a better picture of what happens in practice and how exactly patients can go about receiving their data in a way that is compliant with the law.

Future research will also focus on assessing the strategies of hospitals other than the 83 surveyed, according to the study.

Krumholz hopes his team’s research will stimulate health systems to improve the channels through which patients can gain control of their information.

“We did this study not to embarrass any institution or scold them but to determine whether there were opportunities for improvement,” Krumholz said. “And I think we found even more opportunities to do better than we thought. We were surprised about the pervasiveness of the issue, the inconsistencies in the information and the lack of alignment with the law.”

For patients or family members who are trying to obtain medical records, Krumholz offers advice for navigating through the often complex processes.

“You still have to be strong and persistent [and] respectful,” Krumholz said. “But you’ve got to know that you could be being told something that’s not quite right.”

The Health Insurance Portability and Accountability Act was enacted in 1996.

Matt Kristoffersen | matthew.kristoffersen@yale.edu .

Correction: A previous version of the article stated Hsiao is the Chief Medical Officer of Yale New Haven Hospital and the School of Medicine. Hsiao is the Chief Medical Information Officer of Yale New Haven Hospital and the School of Medicine.