Despite widespread EHR adoption and regulations limiting copying fees, patients still face financial and administrative barriers to health data access, contends a group of authors in a recent JAMA Internal Medicine viewpoint.
These barriers often prevent patients from accessing their personal health data, limiting their ability to engage with providers and keep their care team up to date on the activities of their peers.
While HIPAA legally requires providers to offer patients access to clinical information that pertains directly to their health, organizations may charge a “reasonable, cost-based fee,” explained authors Austin W. Jaspers, BS, Jennifer L. Cox, JD, and Harlan M. Krumholz, MD, SM.
This is primarily because reproducing physical copies of patient records does take a modest amount of labor. In order to reimburse for labor and materials, healthcare organizations may charge these “reasonable” fees.
However, these fees are not always reasonable, the article says. In Georgia, for example, providers may charge $0.97 per page for the first 20 pages of a medical record, $0.87 per page for the next 80 pages, and a flat rate of $25.88 for “search and retrieval” costs.
An individual making minimum wage in Georgia would have to work for 21 hours to pay for a 100-page medical record, the authors said, making patient data access cost-prohibitive.
Widespread EHR use has not fixed this problem, despite HHS guidance to revise patient access laws and prohibit overcharging for copies of digital health records.
“The guidance also reaffirms that only specific health care provider–side costs—labor for copying, materials for creating the electronic or paper copy, and postage—can be imposed as copy fees,” Jaspers, Cox, and Krumholz wrote.
“In the case of medical records accessed and downloaded through electronic health record technology, this guidance significantly limits copy fees charged by the health care provider and in some circumstances, prohibits such fees entirely.”
The guidance set forth a $6.50 flat rate for paper copies made from digital records to offset material costs.
“Unfortunately, most state laws and health care providers still set per-page copy fees,” the trio said. “Some states allow health care providers to charge copy fees for costs associated with data verification and maintaining storage. At least 12 states allow them to impose fees for search and retrieval, for which regulations explicitly prohibit charges.”
Several states have laws in place that conflict with federal data access laws, doing nothing but confusing patients, providers, and lawyers about legal data access regulation, the authors argued. Although they noted that these state laws are likely unintentionally confusing, they still require revision to ensure easier and less prohibitive patient data access.
This presents a need to revise and clarify state laws about patient data access, placing them in accordance with federal laws and potentially reducing the high costs of copying fees.
“Access rights should not require a legal debate or expert analysis of the federal preemption doctrine. Access rights should be clear, direct, self-executing, and obvious,” Jaspers, Cox, and Krumholz asserted.
“Every state should examine its medical records laws, take immediate steps to expunge any portions that interfere with these well-established federal rights, and affirmatively incorporate language that accurately reflects the individual’s right to access their record,” they continued.
Some healthcare organizations and providers are making strides toward easier patient data access. Patient portal access has expanded to 92 percent of patients, and OpenNotes has officially reached 10 million patients.
However, patient portals and open clinician notes cannot show the full scope of patient records, the authors explained, often leaving out images and other data.
The Blue Button Initiative, driven by the Veterans Health Administration, may be a viable solution. This program allows veterans to access their full digital medical records online through view, download, and transmit (VDT) capabilities, and charges no fees.
The authors also lauded some state models for health data access fees. In Kentucky, for example, providers cannot charge patients for their first copies of their electronic health records. The state does charge for subsequent copies, but the authors did not disclose what that fee is.
“The availability of electronic medical records should usher in a new age of easy, inexpensive reproduction of medical records for patients,” Jaspers, Cox, and Krumholz concluded.
“The legal rules for fees connected to access to medical records were written for a paper-based world in which few patients requested their records for health care purposes—a world that no longer exists.”