I was in a discussion with a group of patients about how difficult it is for patients to get access to their own medical records. It was initiated after one of my patients was refused copies of her recent hospitalization. There is much confusion out there about who actually owns the record and how it is allowed to be accessed. Most people are aware of HIPAA, the regulation set into law to protect patients’ privacy. However, it seems this mandate has derailed the stream of medical information, making it even more difficult for patients, as well as their treating physicians, to get these records. This raises the question of who actually owns your medical records?
The answer to this is not such an easy one. Many people have theories about it. The traditional teaching is that the doctor or medical facility owns the actual record, but the patient owns the information contained in it. Before electronic health records (EHRs), it might be easier to understand with paper charts. I bought the folder, the paper, the labels, so the chart belongs to me. But, the patient has the right to access that information inside because it is theirs. A patient cannot just demand I hand over the file to them. Since the advent of EHRs, this because murkier as the information is now digital, hidden behind several walls of secrecy.
The truth is patients have a legal right to get access to their records in a timely fashion and receive copies of them. There is no standard rule around this because every state has its own laws regarding how this should be done. Yes, it is a legal right that patients can get copies of their records. No one can deny them this right because it is against the law. Every state has laws that explain these rights. There is defined in these laws a timeframe which the records must be produced and given to a patient by. There are laws on much can be charged to copy these records for patients. As an example, in my state of NJ, if a patient requests a copy of their records, it must be given to them within 30 days (which I feel is excessive) and I am allowed to charge $1 per page that we copy.
While some patients may think 30 days is too long or they don’t think they should have to pay, that is the law. And some doctors or medical facilities may want to charge more or delay handing over the records, but that is the law. Every state has different laws around this, and patients should know the specific laws in their states. If anyone gives you trouble to get your records, show them the law. If you don’t like the ones in your state, fight to change it.
A patient should know everything about their health. That is the only way they can make the best medical decisions for themselves. Withholding this key data is just negligent. As a primary care doctor, I also find difficulty getting copies of records from other clinicians. I am often left to wonder what was seen in the patient’s MRI or what their last blood work showed. Sometimes, despite the widespread use of EHRs, it can take days to receive vital reports from outside services. How can a doctor give the patient the best care when others fail to share information that is needed to treat patients?
Everyone, doctors, and patients alike, need to learn the rules and make them standard. But far above that, we all need to practice empathy and try to understand each other better. Not providing a patient with their records can be harmful and provoke patients’ anxiety. And in a similar fashion, patients need to understand that doctors are being squeezed by many pressures and demanding immediate copies only adds to that burden. If we all worked together, access to these charts should be the norm and done in a timely fashion for all parties.
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