Who Should Own a Medical Record -- The Doctor or the Patient?

Neil Chesanow

Disclosures

January 13, 2015

Topol: Why Are Doctors and Hospitals the Owners of Patient Records?

When Medscape's Editor-in-Chief, cardiologist Eric Topol, MD, wondered in a recent column whether it was patients or physicians who ought to own patient medical records, it sparked over 400 comments from physicians.

Dr Topol didn't take a position one way or the other. Instead he cited experts on both sides of the issue, as well as a recent Medscape survey in which 54% of the 1100 respondents who were patients believed that they own their medical records, and 39% of 1400 health professionals felt that physicians did.

Dr Topol also cited Open Notes, an ongoing study in which patients are given direct access to their records in their physicians' electronic health records (EHRs), including their doctors' visit notes.[1] It found that up to 92% of participating patients viewed their notes, over 77% reported feeling more in control of their care as a result, and 99% wanted continued access to the notes. Even many physicians, who initially resisted the idea, were won over in the end.

But whether patients should own or have unrestricted access to their medical records isn't a black-and-white matter , as the hundreds of physicians who responded to Dr Topol's column made clear in many thoughtful comments.

"As a patient and physician, it is mandatory that patients own their records because the primary care physician more often than not doesn't know the results of any specialist's visits," a radiologist wrote. "I have had major surgery and even routine screenings such as colonoscopy and mammography without the knowledge of the primary care physician, even though the proper physician information was in the paperwork. The patient is left to coordinate."

"In my office, patients are routinely given copies of all blood work, x-ray reports—all test reports—and these are discussed with the patient," a family physician observed. "Patients really like understanding and being part of their own care and recognizing their goals from test outcomes."

"We should be entering data directly into a personal health record of the patient," an internist believed. "Patients can grant access and authorization as needed. This would also end the entire nonsense about interoperability."

"Any patient I write a report on receives the copy of the report," a physician commented. "If I ordered studies, they get a copy of those results as well. With the computerized system this is only a few clicks of work."

"I strongly believe that the patient and the provider have equal rights to the records," another physician opined. "There has to be transparency both ways, so care is at its best. I hope one day that the technology will be there so that the whole patient-provider interaction is transcribed flawlessly and becomes a medical record automatically."

But there were dissenting views, and many of them are not so easily dismissed.

"Why on earth would any real doctor believe that making patients the curators of their own medical records is a good idea?" an otolaryngologist wondered. "Does Dr Topol believe that every one of our patients is an educated, conscientious person who would provide the same security for records that we doctors do? Does he believe that doctors would be absolved of civil and criminal liability for careless handling of those records by their new owners, the patients?"

"I don't think a patient should have possession of her records, because it would most likely be harmful to her and would undermine whatever treatment process you might be trying to sustain in your interactions with her," a psychiatrist warned. "We could expect to see the patient getting angry at you over what she might choose to protest and most likely is unable to understand, possibly acting out, and because it would result in a potentially inexhaustible stream of questions from the patient that give her more control in the therapeutic process than would be useful, that would primarily serve to lead you both away from the therapeutically necessary focus of her treatment."

"I like the theory of it," a family physician allowed. "But it is remarkable that as a hospitalist, the only requests I get to change my notes are from doctor-shopping drug seekers or alcoholics. If those individuals had sole control of what was in their records, they would be shopping that much more successfully, or editing their own records to their own detriment, like the alcoholic who objected to that diagnosis despite a history of alcoholic seizures, and who wanted all mention of alcoholism removed from his chart. This would have raised his risk for untreated alcohol withdrawal syndrome in the hospital at his next admission(s) and therefore potentially be a risk to his life or future health."

"To have the patient own and keep the medical record is a bad idea," a neurologist maintained. "This is what is being done in the military: The patient gets his/her record from the department or specialty of last visit and hand-carries this to the next appointment at another specialty clinic. The problem is that there's always a chance that the record could be lost/misplaced. Thus, everything is lost forever. Another concern is that a disgruntled patient may decide to delete any page or pages from the record."

"Frequently, part of the medical record is the work product of the physician—notes we make to ourselves documenting things we observe, issues we want to follow up on, problems we are beginning to suspect (eg, drug abuse or spousal relationship issues or abuse, etc.), or diagnostic problems that we are working through," a physician pointed out. "Such documentation does not include more objective data like lab results, radiology reports, formal diagnoses, or medication prescriptions, which more clearly 'belong' to the patient and impact future care. In contrast, these contemporaneous work-product notes will, in many cases, not be relevant to the ongoing care of the patient at a future date. If physicians KNEW that patients could routinely read such notes, would they continue to make them as part of the medical record? If physicians only documented objective data, would patient care suffer?"

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