Should Patients Read the Doctor's Notes?
Their request seemed simple enough: the patient and his wife, both in their 70s, wanted a copy of what I'd written in their medical file. During their visit, I had watched them refer to a well-thumbed collection of doctors' notes and medication lists, so when they asked for a copy of my note just before leaving, I assumed it would simply be added to the others.
But when I mentioned the request to one of the nurses outside the exam room a few minutes later, her eyes grew wide.
"Oh no, you can't do that," she said, shaking her head. "I don't think it's legal." The other doctors and nurses, attention piqued, moved closer to listen. "Send them to medical records," she urged. "He can sign the release papers there."
Another nurse in the growing crowd offered her own advice. "Do you know what's going to happen if you give them a copy now?" she asked. "They're going to start calling and e-mailing you with questions about what you wrote."
The doctors and nurses began clucking in agreement. "Think about it for a second, Pauline," one doctor said with voice lowered. "Maybe they are thinking of suing you."
There was a collective gasp from the group now gathered around me; and I could guess what they were thinking as they craned their necks to peer into the exam room where my elderly patient was busy fussing with his papers as his wife stood adjusting the canvas fishing hat on his head.
The barbarians are at the gate.
For 40 years, the tension over patient access has been playing out in hospitals, clinics and doctors' offices. Although medical records have always been accessible to clinicians, payers, auditors and even researchers, it was not until the 1970s that a few states began giving patients the same rights.
While a handful of physicians were vocal supporters of these early efforts, the majority of doctors were far less enthusiastic. They worried that their notes might become a source of unnecessary stress for patients. Read without an experienced clinician's interpretation, slight abnormalities like an elevated cell count from a viral infection could turn into a life-threatening cancer in the eyes of patients.
Even routine abbreviations and jargon like "S.O.B." (shortness of breath) and "anorexic" (a general lack of appetite, not the disease anorexia nervosa) could be confusing at best and inadvertently demeaning at worst. Doctors, already pressed for time, shuddered at the idea of suddenly being responsible for the worries of a reading public.
In 1996, despite these concerns, the Health Insurance Portability and Accountability Act, or HIPAA, gave all patients the legal right to read and even amend their own medical records. At the time, a group of national health care experts hailed this new transparency as a necessary component of better and safer care.
But today, few patients have ever laid eyes on their own records. And those who try often come back from their missions with tales of bureaucratic obstacles, ranging from exorbitant copying costs to diffident administrators. The same concerns from 40 years ago come up again and again, with little evidence to support or refute the claims of either side. Should medical records be shared as interactive documents between patients and physicians? Can transparency work, or will it end up worrying patients, muddling the patient-doctor relationship and adding more work to an already overburdened primary care work force?
Now, according to the latest issue of the Annals of Internal Medicine, the answers to these questions may finally be answered in a year's time.
This summer, researchers have begun the largest study to date of open access, aptly named Open Notes, involving over 100 primary care physicians and approximately 25,000 patients from three health care centers — the Beth Israel Deaconess Medical Center in Boston, the Geisinger Health System in Danville, Pa., and the Harborview Medical Center in Seattle. In the study, patients who have just seen their doctors will receive an e-mail message directing them to a secure Web site where they can view the signed physician notes. Patients will receive a second e-mail message two weeks prior to any return visit, reminding them that the notes from their previous visit are available for review.
Over the course of the yearlong study, funded by the Robert Wood Johnson Foundation, the Open Notes investigators hope to analyze the expectations and experiences of patients and physicians, as well as examine the number of additional phone calls, e-mail messages and visits that may arise as a result of more patients viewing their doctors' notes. In addition, a public survey on the journal's Web site will assess the opinions of any patient or doctor not enrolled in the study.
"We have one simple research question," said Dr. Tom Delbanco, a lead investigator who is a primary care physician at the Beth Israel Deaconess Medical Center. "After a year, will the patients and doctors still want to continue sharing notes?"
While enrolling patients in the study has not been difficult, finding physicians who are willing to participate has been more challenging. A few doctors were quick to sign on, but "most physicians were ambivalent at best," noted Jan Walker, a registered nurse and health services researcher at Beth Israel Deaconess who is the study's other lead investigator. Many physicians were worried about workload and issues of clarity.
"The note is really a story," said Dr. Sara B. Fazio, a primary care physician at Beth Israel Deaconess who hesitated at first but is now one of the participating doctors. "The meaning of a story depends on the storyteller. Just because I write something down as my version of the facts doesn't mean that they will be the absolute facts or that another person could not interpret those facts differently." While physicians recognize that such differences in interpretation occur frequently, particularly across different specialties, patients may not. "A doctor's note could come across in a very unexpected way to a patient even when the doctor wrote it with the best of intentions," Dr. Fazio said.
The researchers are hopeful that their study will help to settle many of the longstanding issues regarding open access, but one thing has already become apparent. For at least a few of those involved, the once sharply demarcated lines of the decades old tension have begun to fade. It is no longer so clear who exactly stands on what side of the medical records wall.
"In the end," Dr. Fazio said in an e-mail message, "we are all patients — if not now, then someday — and from that perspective it is easy to see the many reasons why this is a step in the right direction."
She added, "I suspect the physician in me will eventually be won over by that perspective given a little time."