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A retired San Diego physician sought a second opinion on some vision issues that had progressed.

But when the medical records from his first ophthalmologist were forwarded to the second -- after repeated requests -- he discovered an unwelcome surprise.

Absent was any description of the growth on the surface of his lens. Nor was there a reference to his progressive impairment, necessary to support his need for the intraocular implant the doctor had recommended.

Also missing was any note about his family history of macular degeneration. His medication list was wrong, as well. "The record was completely inaccurate," he said.

With the April 5 implementation of the federal rule -- also known as "Open Notes" -- "" defined as any health provider (including physicians) must make of electronic records available electronically to the patient upon request , with categories qualifying in the future.

Patients have had the right to access their medical records for nearly two decades, since specific HIPAA provisions took effect. Now that more medical records are in electronic format, the new Open Notes rule requires those reports to be accessible, too.

Some doctors still use the mail to send reports, or withhold them claiming they're the property of the practice. But the day is coming soon when far more patients will actively access those records via their patient portals.

When they do, many will actually read them, recognize all kinds of errors, and demand they be corrected.

"One-hundred percent of medical records have errors," Heather Gantzer, MD, immediate past chair of the American College of Physicians' Board of Regents, told MedPage Today.

"Some of them are nuisances, but some are really impactful and might make a huge difference for the person who was said to be on antibiotics" but was not, said Gantzer, also of Methodist Hospital in St. Louis Park, Minnesota.

Medical Record Errors Common

One patient told MedPage Today she was shocked to read in her PCP's visit summary that she was a "binge-drinker." What she actually told her doctor, in response to his question about how much she drank, was that she might have a few drinks when she was out with friends. She asked another provider in the same practice to delete that phrase, but hasn't checked whether her request was implemented.

Another patient's physician note said she'd undergone a course of antibiotics and nasal sprays for a cough that were ineffective, when those were never prescribed or tried.

This reporter was not able to see her own physicians' recent visit summary notes through two of her doctors' health portals, and when she did get copies by mail, forwarded by her primary care provider, they were full of errors. There was a drug on the active medication list that hadn't been taken in years and symptoms listed that weren't discussed or didn't exist.

A problem that resolved 20 years ago was listed as a current assessment.

One report listed an ICD-10 code R63.4 for "abnormal weight loss" as one of her problems when, as she told her doctor, she had been aggressively dieting and exercising for three months on advice of her PCP, and had lost 30 pounds.

Gantzer gave a classic example of how an error can translate to a tragic outcome. A doctor reads that her patient had an appendectomy -- a note made in error. When the patient presents to the ED with abdominal pain and that history is reviewed, no one is going to consider appendicitis first, Gantzer said.

There's a substantial body of literature highlighting medical record errors as well. In a published last year in JAMA, Sigall Bell, MD, of Beth Israel Deaconess Medical Center in Boston and colleagues surveyed patients who were asked to access their notes from any of three heath systems. The response rate was a low 21.7%, but 21% of those who did read their notes saw a mistake, and 42% of them thought the error was serious.

The errors included wrong body part, wrong side, stating not BRCA1 positive, reason for visit -- pain in hand -- not mentioned, wrong patient, not listing history of anaphylaxis, and a reference to a female's left testicle.

To quantify the problem in one health system, University of Illinois researchers undercover patients with a problem script and equipped them to covertly record their encounters with 36 physicians of a VA Health System. Their 2020 report found 636 documentation errors including 181 charted findings that did not take place.

Some 21 notes "justified a higher billing level," with 40 office visits at a level 4 rather than the 23 justified by the audio recording, "a 74% inflated misrepresentation."

A third , in the Journal of the American Medical Informatics Association in 2019, implemented an Open Notes system at two hospitals and a multi-state hospital network between August 2014 and March 2017. Of the 1,440 patient and family reports, 27% contained a "potential inaccuracy."

Patients and families indicated the inaccuracy was important or very important in 58% of those reports, most of which were related to an incorrect description of symptoms, past problems, or medication lists. Or they noticed important information was missing.

Why So Many Errors?

As physicians, "we really have to make the effort to make patients and families feel like they are partners in and are part of the care team," said Fabienne Bourgeois, MD, the first author of that study, an attending physician and associate chief medical information officer at Boston Children's Hospital.

Errors are so common, Bourgeois continued, because while a few physicians may write their notes during the patient visit, that's not the usual practice.

"A lot of this happens after hours, late in the evening or the next day," Bourgeois said. "Some clinicians are seeing 30 patients a day, and documenting during that visit is not an option. It's chaotic. There's a lot going on."

Some doctors said daily patient demands require they catch up with documentation on weekends.

"Docs rarely proofread our dictations, which are more poorly transcribed in some systems than others," said one neurologist who asked not to be quoted by name. "And doctors are easily distracted, and sometimes mix things up."

Ted Mazer, MD, a semi-retired San Diego otolaryngologist and a past president of the California Medical Association, noted that in many cases, "you have transcriptionists who are not quite getting the story but are going as fast as they can. Or electronic records have drop down menus that 'look like' what's right. So you click. Or the doctor puts in the closest ICD-10 code, which is not going to be 100% accurate every time."

A major problem, he acknowledged, is "nobody ever cleans up the record. I get a referral from a doctor and it says the reason is dizziness. But you go through the medical record, which cloned everything for the past three years. Under neurologic, it says, 'balance: no complaints.'"

Gantzer said that many errors occur from computer-generated templates, like "'pulse in feet intact' when the patient is actually a bilateral amputee," or cutting and pasting other doctors' notes.

"It's like the old game of telephone," she said, where each provider's note may muddy the story just a little bit more, conflating old problems and medications and assessments as if they were current.

One physician candidly acknowledged that his electronic records are full of errors, but lamented it would take at least an hour to correct each record.

No Penalties for Doctors Yet

Interviews with dozens of physicians, medical informatics officials, and patient advocates indicate that many doctors are not aware of the new rule, which is embedded in the , or are just not paying attention to it.

That may be because while the rule enables the HHS Office of Inspector General to impose civil penalties up to $1 million per violation for health IT networks or exchanges that "interfere" with patients' access, penalties are not yet set for health providers who violate the rule.

One hospital official who was a physician incorrectly thought it only applied to health systems, not doctors or independent physician practices. A San Diego concierge doctor said he'd never heard of the new rule.

Patients are even less aware. Several patients told MedPage Today that their portals are cumbersome and don't allow access to many of the 16 categories, such as visit notes or medication lists. Some said they feared portal information will get into the wrong hands and be publicly exposed through a data breach or ransomware attack, which recently victimized Scripps Health and many around the nation.

Others didn't feel the need to look, saying they trust their doctors to make sure they get the right care. Some said they didn't think they'd understand the medical jargon even if they tried.

But as more digitally savvy patients review their physicians' summaries, medication lists, and test results, there's bound to be a tsunami of patients asking questions, seeing mistakes and trying to correct them, especially as these more digitally savvy patients age.

'A Flood' of Correction Requests?

Several providers who have been using Open Notes systems for several years say it's worked well. The anticipated torrent of complaints from patients wanting their records corrected, or getting upset because their doctor coded their shortness of breath as "SOB," just hasn't occurred.

"It just has not proven to be a huge time suck even though we were definitely worried about that in the beginning," said Seth Kaplan, MD, an independent pediatrician in Frisco, Texas. There were processes that lacked consistency that were changed, so clinicians were ready for the rule's start date, he said.

On the positive side, he said, "it's really driven our portal use. We want our families to feel empowered to have that information at their fingertips so that they can best navigate the healthcare system, especially if they end up going somewhere else."

Still, it's unclear how many patients are carefully reading their notes if they have access to them.

Electronic record and Open Notes advocate Dave deBronkart, known as "e-Patient Dave," acknowledged that the physician community has yet to see an onslaught of demands for record corrections because he thinks few patients have been able to get access to them, but those doctors should brace themselves. (See sidebar on patient correction requests.)

"When people do see them, they are typically shocked and want things fixed," he said, adding that there's going to be "a flood" of correction requests.

"It's going to be ugly for years as providers are forced to pay for the sins of insurance fraud and bad health information management practices," he said.

For physicians who fear their patients will besiege them with disputes and demands for correction, Steven Lane, MD, clinical informatics director at Sutter Health in Palo Alto, and a member of the federal Health IT advisory committee, said they shouldn't.

"This rule should, for most of us, raise our level of sensitivity to letting sloppy mistakes get into our work because they're easier for patients to access," he said. "This is really the time to think about what you're writing, the errors, omissions, and things that could be misinterpreted, your choice of words and abbreviations that could be confusing."

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