The Risks And Rewards Of Inviting Patients To Review Their Medical Records

Technology has placed vast amounts of medical information literally a mouse click away. Indeed, 57% of Americans say they get their primary medical information from the internet.  Maybe that’s because, an individual’s main potential source of information, the doctor’s notes, taken after a visit are not traditionally part of the discussion. Such records have long been out of bounds.

After patient encounters, doctors have long written notes ranging, from cryptic abbreviations on an index card to lyrical essays. Yet despite a patient’s legal right to read their doctor’s note, few do. Although literature suggests that promoting active patient involvement in care may improve doctor-patient communication and clinical outcomes, both patients and doctors express everything from enthusiasm to dismay when it comes to sharing the visit note.

In Open Notes: Doctors and Patients Signing On,  researchers speculate about the risks and rewards of making clinicians’ notes transparent to patients.  “Opening documents that are often both highly personal and highly technical is anything but simple,” say the investigators from Beth Israel Deaconess Medical Center.

Their OpenNotes study will include more than 100 primary care doctors and 25,000 patients who will be invited to read their notes.  Some primary care doctors interviewed as part of a pre-study assessment “…anticipated both clinical benefits and efficiencies from incorporating laboratory findings and recommendations into the note, thereby obviating the need for a follow-up letter.” They hoped for improved patient education and more active involvement by patients in their care.

On the other hand, some doctors “worry first and foremost about the effect on their time, including calls, letters and e-mails as patients seek clarifications, disagree with statements, or correct what the doctors consider trivial errors of fact.”

Others were concerned they would have to leave out important information, omit frightening diagnostic or therapeutic considerations, or that patients would not understand that ‘SOB’ stood for ‘shortness of breath.’   And some were simply embarrassed about how they write!

From the patient perspective, views are also somewhat mixed.  For some of the patients, the dialogue inherent in the process was appealing.  On the other hand, some clearly do not want to read what their doctors write because they are worried about discovering something they would rather not know, finding potential diagnoses that might make them anxious, or reading what their doctors really thought of them.

The study will use secure Internet portals and only include notes written during the trial period. While they are gathering considerable data from the patient and doctors’ experiences during the study period, investigators say their ultimate question is whether the participants will want to leave the OpenNotes switch on after 12 months.

What do you think about sharing notes with your doctor or patients?  Word on Health is waiting to hear from you.