Should patients pay for access to their medical data?

In the digitization of healthcare, paper records are slowly becoming extinct. However, hospitals and health systems still charge patients for copies of their record, whether they are on paper or in digital format.

Niam Yaraghi, PhD, a fellow in the Brookings Institution's Center for Technology Innovation, wrote that patients don't own their records; physicians do. However, patients should have access to their records to help them become engaged and involved in their care. What's more, he wrote that patient access to medical records can help foster connectivity in a still disparate IT environment. "Patients can act as exchange mediums of medical information and physically bridge the digital gap of interoperability between different EHR systems," he wrote. "If patients have their medical data, they can share it with other medical providers."

Yet patients often don't have easy access to their medical records, and state laws allow providers to charge patients a per-page fee for making copies of their records. The maximum cost permitted in states varies from $100.63 in Georgia to $18.75 in California, according to Dr. Yaraghi's calculations.

What's more, even though the vast majority of hospitals use EHRs — 94 percent — they still sometimes charge patients for medical records. Even though state regulations, Dr. Yaraghi wrote, are centered on paper records, providers are applying them to digital records as well.

Dr. Yaraghi conducted an online poll asking how much patients are willing to pay for access to their records. The majority of respondents (68.1 percent) said they are not willing to pay anything. The next most common response (10.4 percent) was between $0.01 and $9.99.

The medical record copying fees were enacted so providers would be "adequately reimbursed for the additional efforts that they have to make in order to copy medical records at the patients' request," according to Dr. Yaraghi. But now that the cost of copying digital records is effectively zero, he suggests state regulations require providers to let patients have their medical data for free.

Dr. Yaraghi wrote that while patient portals are intended to allow patients access to their records and are required to meet meaningful use stage 2, many providers still don't offer portals. Additionally, many patients are unaware of the value of having access to their own data, he wrote. "If patients are adequately informed about the potential benefits of their medical data, they are more likely to demand a copy of their medical records from their providers. When many patients ask providers to copy records it becomes much more difficult for them to refuse."

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