Open Notes

Doctors and Patients Signing on

What would happen if you could peek inside the chart and see what your doctor has been recording about you? Primary care doctor Tom Delbanco, MD, and Jan Walker, RN, MBA, both of Beth Israel Medical Deaconess Medical Center and Harvard Medical School, are leading a national study to find out.

This article, published July 20, 2010 in the Annals of Internal Medicine, profiles OpenNotes, a program that enables patients open access to the notes that doctors record during and after their visits.

With a $1.4 million grant from the Robert Wood Johnson Foundation's Pioneer Portfolio, more than 100 primary care doctors and about 25,000 of their patients were given access to personal medical records online for a 12-month period beginning in summer 2010. The trial was conducted in a major urban hospital in Boston, an integrated health system in rural Pennsylvania, and a county hospital in Seattle.

The article reports on conversations the authors conducted with doctors and patients before they experienced OpenNotes about anticipated risks and benefits of open medical record access. While patients have the legal right to examine their medical records, it is rare for doctors and patients to use the record as a collaborative tool.

Key findings:

  • The benefits anticipated by patients include better communication with their doctors, improved recall of the patient visit, and increased ability to build a personal care network with family and friends. Patients were concerned about several potential problems, including difficulty interpreting medical terminology, lapses in patient privacy, and altered relationships with doctors.
  • Doctors voiced concern about the project, primarily about the potential loss of time if patients engaged rigorously with their records. Doctors were also concerned that they would have to trade off scientifically precise language for language more accessible to patients.
  • Doctors anticipated several prospective benefits to open access, including better incorporation of findings and recommendations into the record, improved patient recall of the visit, and more robust interactions with patients with chronic illnesses and their families.

Opening up provider notes to patients may appear to be a subtle system tweak, but it could have profound implications for patients’ engagement in their care and the nature of the patient-provider relationship. This intervention is not just about providing access to medical records—labs, prescription histories, allergies, etc.—it’s about giving them access to the actual notes that the doctor records about a visit. Under HIPAA, everyone has a right to his or her full medical records (including doctor notes), but the process for obtaining them is often slow, cumbersome and even expensive in some cases. Through the OpenNotes study, patients will receive a secure email after the note has been completed following visits with their doctors, and they can see them right away. They will also be prompted to review the note prior to their next visit. Instead of limiting access to the very determined, access will be convenient and easy for anyone who’s interested.

Several key trends are at the heart of this study: greater patient-centeredness in the provision of care, the need for patients’ increased engagement in their care, and a systemwide move toward greater transparency. Among the hypotheses that Delbanco and Walker will test are that giving individuals their medical encounter notes will help improve patient recall, empower them to take more responsibility for their care, offer an opportunity for avoiding potential medical errors as patients and families monitor and think about their care in a more active and knowledgeable way, and boost the overall level of trust in doctor-patient relationships. The move is not without controversy, however; some suspect doctors will modify notes to be less candid or comprehensive if patients become part of the viewing audience, or providers could be deluged with back and forth emails, overtaxing their capacity to support ongoing direct communications with patients.

The research team will measure the impact of OpenNotes through online surveys of both groups of doctors and patients and generate the needed evidence to inform this debate and guide provider behavior.