September 10, 2019

In health care today, there's a great emphasis on amassing large databases of patient medical records, but for many patients the process of accessing their own records can be challenging—and it's completely "at odds with your federal rights," Harlan Krumholz, a cardiologist and professor at Yale School of Medicine, writes for NPR's "Shots."

Learn 10 use cases to integrate patient-generated health data (PGHD)

Why are medical records so hard to get?

"If you try to get [your medical records], be prepared for confusing policies, ill-informed staff, wasted time and high costs," Krumholz writes. "Even then, you may not get the records you seek."

As an example, Krumholz relates his relative's experience trying to access her digital medical records. His relative has requested a copy via email, but "[t]he hospital had contracted with a third party, and evidently this company transacts only through snail mail," Krumholz writes. Two months later, his relative is still working to access her records.

According to Krumholz, research, including his own, shows that his relative's experience is "typical."

In a study published last year, Krumholz and his colleagues surveyed 83 top hospital in the United States to investigate medical records access. They found discrepancies between the medical record policies the hospitals described on patient authorization forms and what hospital employees told patients on the phone.  

"On the forms, hospitals often did not provide an option to receive the entire medical record in digital format," Krumholz writes. But "[o]n calls, employees said they would release the whole record."

Krumholz and colleagues also found most hospitals refused to provide medical records in the format patients requested, which he writes goes against federal regulations. The hospitals also made records access very expensive, charging as much as $541.50 for records, even though federal guidelines recommend digital records cost no more than $6.50, Krumholz writes.

In addition, a yet-to-be-published study made available on medRxiv, an online platform that publishes research before it is peer-reviewed, surveyed more than 3,000 health care providers and found that the majority violated patient rights regarding access to medical records or were out of compliance with HIPAA's limitation on fees.

"[T]hese studies show that many health systems around the United States … routinely violat[e] people's right to access their digital health information," according to Krumholz.

How to gain access to your medical records

While patients don't have a lot of options when trying to access their medical records, Krumholz writes there are three things patients can do to improve their chances of success:

1. "Know your rights." HHS' Office of the National Coordinator for Health IT states that patients have the right "to inspect, review, and receive a copy of [their] health and billing records that are held by health plans and health care providers," as well as the right to correct their health record by adding information. According to Krumholz, these rights also apply to health records created by laboratories and pharmacies.

2. "Be persistent." You may have to push to be successful, especially since "[t]he studies indicate that health care providers are often ill informed about the law," Krumholz writes. He explains, "I know someone who was about to be charged $450 for medical records, and by knowing her rights she bargained the charge down to a reasonable amount, though still out of compliance with the law." In some cases, Krumholz writes you may have to push higher up in the organization to get what you want.

3. "Support change." Patients should support change in the way the government enforces current laws regarding medical records, Krumholz writes. "When your rights are violated, you can contact the Office for Civil Rights or your congressional representatives for help. What you do may help the next person."

A reason for optimism

Although a lot of patients still struggle to access their medical records, "[t]here are reasons for optimism," Krumholz writes.

Technology startups are developing tools that can help people obtain their medical data more easily, and the Trump administration has expressed interest in continuing the push to improve interoperability, according to Krumholz.

"I hope that we are on the cusp of a historical moment when people will finally get full access to their digital data, as specified under the law," he writes. He adds, "This could be a transformational shift giving patients more power to shop for their care, to understand their care, and to become true partners in research" (Krumholz, "Shots," NPR, 8/28).

Learn 10 use cases to integrate patient-generated health data (PGHD)

In the era of connected health, patients want digital access to medical records, online appointment management, easy medication management, and other features and services that help put them in control of their health care.

In this report, we highlight some trends related to PGHD, outline a vision for connected care, cover different use cases, and give some initial considerations for how to approach PGHD initiatives in your organization.

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