Some of the rewards of reading your own medical records are obvious. It’s the best proven way to make sure the doctor understands everything you’ve tried to communicate to him or her, and vice versa. Still, many are reluctant to take the step of requesting their own records, as if they’re prying into a secret space not intended for their access.
Now though, there’s new scientific evidence for the benefits of getting and reading your records. That’s a special thrill for me, as it validates advice I’ve been giving for a long time. You are entitled to your complete chart from any medical facility that has treated you.
But why, you say? Read on for enlightenment.
Following the Plan
Most of us are so used to the antiquated communication system of the average doctor’s office that we don’t notice how fundamentally weird and outdated it is. There are two sets of records:
- The official record, the one we never see, has all the good stuff: the blood pressures, lab results, doctors’ notes, and other concrete data that make up our health profile.
- The other record, the one we do see, consists of random scribbled notes or forms that are handed to us. Insurance claim forms prescriptions, maybe a generic handout about our condition. Even prescriptions are written in a code that can’t be cracked until the pharmacist spells it out on the bottle. But very little of the documentation we actually see tells us what the doctor thinks is wrong and what the game plan is for treatment and follow-up.
Little wonder that the track record of patients adhering to the doctor’s plan is abysmally poor.
For years, doctors fretted about patient "compliance," as the issue used to be condescendingly called, but little happened. Now, a simple solution: Make it easy for the patient to obtain and read their own medical records, and adherence markedly improves, which is good for the patient and improves communication, which decreases medical malpractice.
Even when someone is motivated to get well or to improve already good health, adherence to the medical plan can be difficult. There are many reasons why someone fails, for example, to take his or her medicine: She forgets, it’s inconvenient or difficult to take, the symptoms went away, the medication is expensive, the side effects are unpleasant.
According to a stuffy published in the Annals of Internal Medicine, patients were more likely to take medication as prescribed when they reviewed doctors’ notes, and doctors reported that this information sharing improved their relationship with patients.
When the sharing process was facilitated by offering the notes online, 9 in 10 patients read them.
The study involved 105 primary care physicians and 13,564 of their patients in a project called OpenNotes at three different East Coast hospitals. It provided electronic access to files.
Kaiser Health News did an article about the new study. One study author told KHN, "Medication adherence is one of the greatest problems in health care, yet flipping this switch seems to activate patients."
Referring to the practice of reading the doctor’s notes, one patient said, "having it written down. It’s almost like there’s another person telling you to take your meds."
Intangible benefits were also important in this stuffy. As the study authors wrote, patients reported "an increased sense of control, greater understanding of their medical issues, improved recall of their plans for care and better preparation for future visits."
The bottom line was impressive. By the end of the study nearly 99 in 100 participating patients wanted continued access to their doctors’ notes. All of the participating hospital sites plan to expand patient access to their doctors’ notes.
Too Much Information? Not to Worry
An earlier study in the same journal cited worries by medical professionals that patients who read doctor notes could misunderstand terminology and shorthand, and that note sharing would add to their workload.
But that wasn’t what happened. Few doctors whose patients used OpenNotes reported spending more time in either the exam room or answering questions later.
Some doctors even changed their words to avoid offending patients who read the file; for example, they used "body mass index" instead of "obesity." But some patients, it appears, respond to the more direct approach. On patient said, "In his notes, the doctor called me ‘mildly obese. This prompted my immediate enrollment in Weight Watchers and daily exercise. I didn’t’ think I had gained that much weight. I’m determined to reverse that comment by my next check-up."
A Kaiser Health News story about the earlier study pointed out that giving patients direct access to their medical information can help identify medical errors and omissions. This is a subject with sometimes-tragic consequences.
Some Open Notes readers realized that tests the doctor called for hadn’t been ordered, and that as many as 1 in 4 abnormal test results weren’t followed up in timely fashion.
Dr. Melody T. McCloud, an ob-gyn, got a professionals’ eye view of this situation when a car accident turned her from a doctor to a patient.
Writing on KevinMD.com, she related how glad she was to have read her doctor’s notes. "I liked to be an informed patient," she wrote. "It was sometimes difficult to decipher some doctors’ scribble, but I discerned accurate documentation of my ‘HPI’ – history of the present illness – as well as that of the exam performed, and pertinent findings."
Although her essay was primarily a cautionary tale about electronic medical records, her point about ensuring chart accuracy applied to the hand-written notes as well. McCloud has confidence in her personal physicians, but she found her chart indicated a procedure had been done when, in fact, it hadn’t.
Whether electronic or handwritten, her point is valid: "[I]naccurate documentation can potentially harm patients by not providing an accurate representation of their condition."
McCloud encourages patients routinely to request a copy o their records "to do the best they can to assure that what the doctor enters accurately records what was told to them. Medical records must be accurate in every way, every day; the profession and the patients deserve no less."
One reader of the KHN story confirmed that wisdom. "Where patient review of the notes would be extremely helpful is in allowing the patient the ability to clarify points. How many times have you understood someone to mean something when they meant something else?" he asked. "Doctors are trained to ask follow up questions, etc., but no one really does that when you think the point was obvious. But not all patients are well educated and may use the wrong terminology or just plain misspeak. This gives a check and balance to help ensure appropriate communication."
How to Obtain and Understand your Medical Records
Getting your medical records is easy. You just have to put in a written request with who ever keeps them. Sometimes they have their own form that they want you to sign. But once you ask, you have a legal right under the federal HIPPA law, to receive a copy of your complete records.