No one is a bigger advocate of transparency and openness in medicine than I am. I’m a vigorous advocate of good communication between patients and their doctors, and a firm believer that one of the problems with our health care system is that there is too much secrecy, too much hidden from patients’ views, especially when things go wrong.
But a recent initiative by Beth Israel Hospital, although obviously well-intentioned and in keeping with the current trend toward openness and patients’ participation in their care, raises serious questions about whether there are some circumstances where patients may not benefit from a sharing of information. The hospital has announced a pilot program that will make medical notes written by mental health providers available online to the patients as part of the patient gateway. This means that these patients can log on to their computers and read exactly what their counselors, psychiatrists and psychologists are saying about them.
While the legal right of patients to access their medical records is firmly established, no one could seriously dispute that the records sometimes contain confusing or difficult-to-interpret information. There are many benefits to open access—clear understanding of medical conditions, the ability to correct errors, the feeling of participation and shared responsibility for care among them—but patients who don’t understand or misinterpret what they read may suffer unnecessary upset and anxiety.
The concern about patient reaction is heightened when the records in question are written by mental health providers. It’s not hard to imagine a situation where the very mental health issue that necessitates treatment may also make it difficult for the patient to read and understand the record objectively and dispassionately. And unfortunately, the most sensitive and disturbing information may be contained in the records of the patients who are least equipped to grapple with that information.
The Beth Israel pilot program is an important expression of openness and communication. But it provides—if not requires—an opportunity for even more openness and communication. Mental health providers not only need to discuss with their patients how to read and interpret what’s written in the record, but also whether and when the patient should access the records. Just because they have the right and ability to access doesn’t mean that every patient can or should exercise that right. It’s heartening to see that some of the patients quoted in the Globe article recognize that having the right to see their records also means that they have the right not to see the records.