At a time when many insurers and health information technology companies are busily assembling databases of hundreds of millions of medical records, Americans find it difficult to get access to their own.
If you try to get yours, be prepared for confusing policies, ill-informed staff, wasted time and high costs. Even then, you may not get the records you seek. And all of this is at odds with your federal rights.
Last week a relative of mine relayed a typical story. She requested her medical records in digital format, a right endorsed in federal statutes. Now, two months later, she is still struggling to get them. The hospital had contracted with a third party, and evidently this company transacts only through snail mail.
My colleagues and I have previously investigated records access. In a study published last fall, we surveyed 83 top American hospitals and found discrepancies were common between the policies hospitals described on patient authorization forms and what employees later said to patients on the phone.
On the forms, hospitals often did not provide an option to receive the entire medical record in digital format. On calls, employees said they would release the whole record. But most hospitals were out of compliance with federal regulations by refusing to provide the documents in the format requested by patients.
Many hospitals made it expensive to get records. Despite federal guidance that records delivered digitally should not cost more than $6.50, hospitals charged as much as $541.50 for a 200-page record, often without mentioning other options.
In another study, published in June, we showed how hard it is to get your radiology images. Almost every institution could provide them only on CDs, an antiquated technology. The cost could be as much as $75. If you wanted images from departments outside radiology, then you would need to make a separate request for each one.
In a preprint recently published on medRxiv, an online platform that shares research before it has been peer reviewed, researchers reported the results of a study of people's access to their medical records.
The authors include Deven McGraw, former deputy director for health information privacy at the Department of Health and Human Services' Office for Civil Rights, who is now chief regulatory officer at Ciitizen.
McGraw and her colleagues found that the majority of the more than 3,000 health care providers they surveyed were violating rights concerning access to health care data. The most common failure was the "refusal to send records to [a] patient or a [patient's] designee by e-mail." Many health care institutions were also likely out of compliance with the Health Insurance Portability and Accountability Act's limitations on fees.
Together, these studies show that many health systems around the U.S. fail to comply with the law by routinely violating people's right to access their digital health information.
So what can you do to improve your chances?
First, know your rights. You have the right "to inspect, review, and receive a copy of your health and billing records that are held by health plans and health care providers," according to the website of the Office of the National Coordinator for Health Information Technology. You have the right to "correct your health record by adding information to it to make it more accurate or complete." A guide from the Office of the National Coordinator can help you with the details. By the way, these rights also apply to records created by pharmacies, laboratories and insurers.
Second, be persistent. The studies indicate that health care providers are often ill informed about the law. To be successful, you may need to push. 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. If you want your records, then sometimes you will need to keep at it. You may even need to push the issue high up in the organization.
Third, support change. What we need, for starters, is for the government to enforce the current law. The law is explicit regarding your right to access your health information. Your rights under federal law need to be respected. 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.
There are reasons for optimism. For instance, there is work on tools to help people obtain their data more easily. (Disclosure: I founded a startup that developed a tool called Hugo, a platform to help people get their data digitally.)
Groups such as OpenNotes are setting an example by encouraging access to all our health care data and encouraging patients to read their health care provider's notes and records as a way to improve their care.
With the Trump administration's interest in interoperability of medical records, 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.
When patients have easy access to their data, they will have the chance to use that data for their own benefit and the benefit of others. 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.
Harlan Krumholz is a cardiologist and the Harold H. Hines Jr. professor of medicine at Yale School of Medicine. He directs the Yale New Haven Hospital Center for Outcomes Research and Evaluation. He is the founder of Hugo, a personal health information platform.
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