The OpenNotes program was launched in 2010 to give patients real-time, unfettered access to their medical records. Early evaluations were positive, both from patients’ and providers’ perspectives. This study, conducted five years later, found the program helps to deepen trust between primary care providers and patients while increasing patients’ understanding of their health and improving their ability to take care of themselves. Concerns about privacy appear to be relatively minor. The program is now being extended to specialists, mental health providers, and physical therapists.
- Many patients reported that having access to their clinical notes helped enhance trust in their doctors and in the care they were receiving. One study participant commented, “I think it’s important to know that I’m trusted as part of this relationship. And it helps me trust the doctor as well.”
- Nearly all interviewed patients reported that reading their notes led them to correct their therapeutic regimen in some way, typically by correcting wrong dosages or the timing of medication. “I discovered that the doctor [had] misunderstood something I said,” one participant said. Another noted that having access to their record “sometimes clarifies my need and use of medications.”
- Study participants reported an increased sense of control and reduced feelings of helplessness. They also felt encouraged to take care of themselves and ask questions. As one individual said, “It made me feel…proactive…and not just reacting.”
- While the majority of study participants read and reviewed notes on their own, some also shared the contents with family members or other physicians. Some said they might actively withhold information because of the possibility that other people might read their notes, especially information about spouses or family. While some participants desired an option to approve notes, few were interested in coauthoring notes with their providers.