Enabling patients to see their doctors’ medical notes is a simple yet radical idea that has the potential to transform the way patients engage with their health. That's what OpenNotes does, helping to move us toward an era where patients have the information they need to become true partners in discussions and decisions about their health care.
Supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio, OpenNotes is being tested by more than 100 doctors and 21,000 patients in Boston, rural Pennsylvania and Seattle. Researchers are surveying patients and doctors about their expectations before and experiences after engaging in OpenNotes to measure how perceptions for both doctors and patients have changed regarding the benefits and risks. They will also examine how patients and doctors use open visit notes and what difference it has made to the way patients engage with their health and how care is delivered. Up until now, there has been little evidence about the merits or drawbacks of making medical notes available to the patient.
Doctors routinely take notes during patient visits, capturing what was discussed and what advice was given. But patients rarely get to read these notes. If patients were able to readily see and review their doctor’s notes, they could use the information to help make decisions about their health care and better manage their illnesses.
Patients are allowed to request and review their medical notes under the 1996 Health Insurance Portability and Accountability Act. However, few take advantage of this option, and few doctors invite patients to do so as a matter of routine. When patients make the request, it's often an arduous and at times expensive task, since many doctors are still writing notes by hand.
Opening up doctors’ notes to patients could help build trust, leading to a more productive doctor-patient relationship. Ready access to doctors’ notes could help patients remember what was said during a visit, improve adherence to medication, and prevent medical errors. Giving patients their doctor visit notes can also make it easier for them to engage family members and others in their care.
OpenNotes makes it easy for patients to access electronic medical notes. Doctors record their notes in the patient’s electronic medical record, and after each visit, invite patients by email to view the notes through a secure online portal. Patients also are invited to read the notes before their next visit so they may be better informed at their appointment.
Although final results will not be out until 2012, a survey conducted prior to the launch of OpenNotes provides important clues to patient and doctor reaction to this idea. Pre-survey results show patients are overwhelmingly interested in having access to their notes, while doctors are cautious. Doctors who have signed on to use OpenNotes appreciate the potential for open records to improve care for patients, but they, along with doctors who declined participation, were concerned that the notes would confuse patients and worried about disruptions to their work.
Results from OpenNotes’ 12-month study will offer the necessary evidence to understand the impact of open medical notes for both patients and doctors, and the challenges that must be overcome to make it a routine part of care.