“I had a patient recently who demanded that I remove the diagnosis of opioid use disorder [OUD] from his chart. He’s been on them for years, and has had abnormal urine drug screening. At that point, OUD isn’t a ‘thought,’ it’s a fact.”
One radiologist apparently copied and pasted notes into various medical records. A psychologist patient who viewed her medical record noted that “the radiologist reported that I had a normal appendix. My appendix was removed when I was 8 years old! I pointed this out to my PCP [primary care physician] so she would not be misinformed.”
A patient’s request for the physician to change the medical record can help identify and correct a medical error, but the request might also be aimed at covering up accurate ― but possibly damaging ― information.
“Mostly [patients] don’t want psych diagnosis in their chart or are concerned a diagnosis will raise their insurance premium, so they ask me to delete it,” one doctor commented. On the other hand, “I have had one patient correct me on a timeline in the HPI [history of present illness] which was helpful, and I made the requested correction in that instance,” said a North Carolina family physician.
Doctors are not obligated to make the requested change, but they do have to respond to each request ― a requirement that many doctors aren’t aware of, says Michael Warner, DO, an associate professor at Touro University California, in Vallejo, California, who has written on the topic.
“Physicians usually do not know about the strict deadlines to comply, their obligation to give written notification to the patient, or the need to notify other participating providers,” he says.
Greater Access to Records May Boost Requests for Changes
Patient requests to change the medical record have been relatively rare, but there are signs that they may become more frequent.
The requirement that doctors respond to requests is part of the federal Health Insurance Portability and Accountability Act (HIPAA), which also allows patients to get a copy of their medical record ― an essential first step in asking for a change. Despite HIPAA, it has often been hard for patients to get their records, but it will soon become markedly easier.
Beginning April 2021, patients will have the right to access a patient portal or other electronic access point, as directed by the 21st Century Cures Act. Patients will be able to examine their records, find more errors, and ask for changes.
Many large healthcare providers have already made it easier for patients to review their records. The OpenNotes movement, in which physicians and hospitals encourage patients to examine their medical records, is spreading to practices and health systems across the country.
Patients who make requests have a broad set of concerns. In a University of Michigan Health System (UMHS) study, patients were most concerned about the outpatient letter or note (37.7%), followed by the discharge summary (10.3%), emergency department note (10.1%), outpatient consult (8.3%), psychiatry note (2.9%), progress note (2.8%), and psychiatry outpatient evaluation (2.4%).
Sorting Out Valid and Invalid Requests
Patients who want doctors to expunge valid information may be worried that the information could get them into trouble. Examples are a lab result that indicates the presence of a controlled substance in the patient’s blood, a doctor’s comment that the patient exhibited drug-seeking behavior, or a doctor’s note that might affect the patient’s insurance coverage, Warner says.
For instance, “The doctor may have indicated that the patient’s injury took place at home, but the patient asserts it took place at work, in which case it would be covered by worker’s compensation,” he says.
In the UMHS study, requests to expunge correct information represented just a sliver of patients’ total requests. The requests amounted to 6.6% of all requests, whereas 77.8% of requests involved real errors or omissions, according to the investigators. Of the valid requests, only about half were approved ― meaning that doctors in the UMHS study denied a large number of legitimate requests.
According to Warner, there are plenty of ways that errors creep into the medical record. For example, an electronic health record’s (EHR’s) copy-forward function allows the doctor to replicate data from a previous encounter note without having to rewrite it, but the doctor may forget to add or take out certain information.
Some doctors recognize that their own records are rife with errors, and they welcome patients’ changes. “I’m sorry to say I can find errors in almost every [record],” a Washington physician wrote in a comment to a Medscape article. “It is all too easy to get the story wrong.”
In addition to correcting obvious errors, many patients request changes that involve embarrassing comments that the doctor may be able to reword without affecting patient care.
“I have had patients request, or sometimes demand, that information about extramarital or same-sex sexual contact be excluded,” a Rhode Island family physician wrote in the ACP Internist. “I even had a patient who didn’t want ‘constipation‘ listed on his problem list.”
The UMHS study found that even when requests called for the removal of valid information, 27.8% of those requests were approved. The doctor may decide to change the wording or drop a reference in a way that would not affect care. Doctors may even be under some pressure within the organization to fix information that the patient is unhappy about.
There are instances of other patient-requested record changes that were denied, according to David A. Hanauer, MD, associate professor of pediatrics at the University of Michigan Medical School, Ann Arbor, Michigan. He is the lead author on the UMHS study. Some examples:
“Please let the patient know that we are simply documenting that he had a positive urine test. We have also documented that he denies using drugs. We are not saying he used drugs, simply that he has been exposed to drugs.”
“The purpose of our admission document is to present the information as we receive it at the time of admission…. I understand that the patient currently has a different view of events that occurred at that time, but that does not change what we saw (and documented) in the original note.”
“No recollection of this case from 5 years ago.”
One denial ended with this observation: “I have no problem with these opinions of hers being recorded for the record as long as they are not attributed to me.”
One physician commenting on a Medscape article said his patients had lodged “a few complaints monthly with administration, [which asks] for notes to be changed to improve patient satisfaction scores.”
For example, rather than saying the patient is obese, the doctor might note the patient’s body mass index. However, it is not always possible to make such tweaks without fundamentally changing the meaning, wrote a Kentucky psychiatrist responding to the Medscape article.
“Some may say you should find a way to say it ‘nicely,’ ” he wrote. “Some things aren’t nice, and efforts to say them ‘nicely’ lead to gross distortions.”
Patients’ Right to Request a Change
Easier access by patients to their medical records, however, does not necessarily mean there will be a flood of requests for changes ― valid or invalid. In a 2014 study of requests for changes at the UMHS, only 0.2% of patients who asked for a copy of their chart submitted a request to change it.
Patients have the right to request changes in their medical record under Section 164.526 in Title 45 of the Federal Code of Regulations. This particular HIPAA regulation states that a provider, including a doctor or hospital, can require patients to submit their requests in writing and to explain why the request is being made.
The provider must inform the patient in advance of its policy on how it handles these requests and maintain a list of the persons or offices in the organization who are responsible for receiving the requests, the regulation states.
Basically, the patient can ask to have an error corrected, such as an incorrect lab value, or that information be added that has been omitted, such as not noting a family history of a disease. In the UMHS study, 77.8% of requests alleged incorrect information, and 15.6% alleged missing information.
In enforcing the policy, some federal agencies have broadly interpreted what constitutes a request for a change (such changes are known as “amendments” in HIPAA parlance). Emails, letters, and even telephone calls complaining that the records are not correct have been considered a “request to amend” by enforcement agencies, according to an advisory by MagMutual, a medical malpractice carrier.
How to Respond to a Request
The HIPAA regulation does not set any time limit as to when the patient has to make the request.
The provider has 60 days to inform the patient that the request is either granted or denied. The provider may extend the time limit by 30 days by providing the patient with a written statement explaining the delay and supplying the date when action will be taken, the regulation states. The provider can opt for this extension one time.
Warner says the provider cannot charge for any work to receive, deny, or approve a patient’s request under HIPAA regulations. HIPAA rules on requests for access to medical records only allow the provider to charge for the cost of copying the records, not for the work in gathering them.
In addition to the HIPAA process, California and New York provide patients with a way to enter material into the medical record without changing what the record says. In the California process, patients simply add material and don’t ask doctors to change what the record says. This is faster than going through the HIPAA process. With the HIPAA process, material can be removed.
Don’t Remove the Original Information
Doctors who agree to make changes on behalf of the patient must follow certain rules. To make any kind of change, a line must be drawn through the original material in a paper record, and the new material must be written in, Warner says. The added material, which is what the patient requested, is then included in the patient’s folder.
Whenever any change is made in the medical record, the original material cannot be erased, because it may be needed later for clinical or legal reasons, Warner adds. Removing the information, he says, can be interpreted as trying to cover up an error.
Warner says the same basic approach is used to change the EHR, but the EHR provides an easier way to link all the patient’s communications directly to the original material. The patient’s request can be scanned and filed in an appropriate place in the EHR system, such as under “patient communication” or “miscellaneous,” Warner says.
After making the change, the physician or the organization must then inform the patient, obtain the patient’s response, and ask the patient for the names of other caregivers who would need to know about the change, Warner says.
The HIPAA regulation states that the provider must make “reasonable efforts” to inform caregivers mentioned by the patients as well any caregivers who the doctor knows have also received the information.
“This process is called ‘link and notify,’ ” Warner says. “‘Link’ refers to finding out all providers who have been treating the patients, and ‘notify’ means sending each one a message letting them know that the amendment could change their medical decision making for the patient.”
Warner adds that the doctor may also have to change an ICD-10 diagnosis code if a correction is made. “For example, if the record stated there was right shoulder pain and the pain was really in the left shoulder, there is another ICD code for that,” he says.
What If You Wish to Deny a Request?
The HIPAA regulation lists several possible reasons for denying a request: the information was in fact accurate and complete; the provider was not the source of the information; the information was not available for patient inspection, as would be the case, for example, for a psychiatrist’s notes; or the information was not part of the medical record.
The denial is put into the record and sent to the patient. The regulation states that the denial must be in “plain language,” contain the basis of the denial, inform the patient that he or she can submit a written disagreement with the denial, and tell the patient how to file a complaint about the denial within the doctor’s organization and with the Office of Civil Rights in the Department of Health and Human Services (HHS).
The denial can be quite brief, says Hanauer. “Doctors who denied a request for a change usually gave some reason, which often was, ‘I was just reporting what I was told,’ ” he recalls.
Patients have no power to overturn to the doctor’s denial, but they do have the right to respond to it in a “statement of disagreement,” which, like the original request, must be put into the medical record, the regulation states. The provider may “reasonably” limit the length of the patient’s statement of disagreement, the regulation adds.
The patient’s statement might contain new information, such as a second opinion from another doctor. The physician then has the option to write a “rebuttal statement,” which is also put into the medical record and is sent to the patient. The regulation does not put a limit on these back-and-forths. All statements are linked together in the record, it directs.
If a patient files a complaint with the HHS Office of Civil Rights (OCR), the OCR may contact the physician or the organization to hear their response. But it is much more common for patients to file complaints with the OCR about being denied access to their medical records, says Joseph J. Lazzarotti, an attorney at Jackson Lewis, in Berkeley Heights, New Jersey.
Lazzarotti says none of his clients are being investigated on requests for changes in medical records, and he is not expecting this to be a big problem. He says determining whether a doctor was justified in denying a request would involve a great deal of interpretation, including some clinical expertise, making it difficult for regulators to investigate these cases.
“When patients seek to amend existing health records in accordance with HIPAA, it can be a mess for doctors to fix, and they won’t get paid for their work,” Warner says. “Tracking down other caregivers who need to know about the change can be difficult.”
However, Warner notes that fixing an error can help improve patient care and boost patient satisfaction. “Those are very important things,” he says.
Leigh Page is a freelance writer living in Raleigh, North Carolina.