What patients value about access to their visit notes

A majority of U.S. health care organizations have adopted electronic health record (EHR) systems and are increasingly offering patients access to the health information contained in electronic health records (EHR), including the notes their doctors, nurses, therapists and others write after a visit, using secure, patient portals. New findings from researchers at OpenNotes and Beth Israel Deaconess Medical Center shed light on what patients value about having access to their visit notes and being invited to participate more actively in the safety of their care.

The results appear online today in the Journal of Medical Internet Research.

"When experts talk about the power of health information technology, we often hear about efforts to make care more patient- and family-centered, but we've heard very little about what matters to the patients themselves, perhaps because information sharing has been largely one-way and passive," said lead author, Macda Gerard, a research assistant at OpenNotes and a first year medical student at Wayne State University in Detroit, Michigan. "We hope that having a better understanding of what patients value about the transparent exchange of health information will guide efforts to improve engagement, the patient experience, and the overall quality of care."

The researchers developed a patient feedback tool linked to the visit note in the EHR as part of a quality improvement initiative aimed at improving safety and learning what motivates patients to engage with their health information on the patient portal. Over the 12 month pilot period, 260 patients and caregivers provided feedback using the reporting tool. Nearly all respondents found the tool to be valuable and about 70 percent provided additional information regarding what they liked about their notes and the feedback process.

"When we asked patients what they liked about gaining access to the content of their notes, four themes emerged," said Gerard. "Patients appreciated the ability to confirm and remember next steps and welcomed quicker access to results. They reported that reading the notes helped them feel heard and gain confidence in their providers, and they valued the opportunity to share information with care partners."

One patient wrote, "I sometimes have white coat syndrome where I am a little nervous in the doctor's office and then cannot remember all that was said. Reading the notes after my visits confirms what I have heard."

Another, "We are grateful to receive "notes" to be able to review the visit and procedures (if any) performed. Especially helpful for older patients who may have hearing and/or some cognitive (or) memory loss."

The researchers identified additional themes related to providing feedback on the notes. Patients liked having the ability to confirm the accuracy of the note and catch potential errors. They valued the sense of partnership that comes with access to notes and described the ability to better engage with the care team. Many cited improved bidirectional communication and enhanced education, and many liked the simple act of being given the opportunity to provide feedback.

One patient wrote, "I like to see that my medical records as embodied in the notes are consistent with the conversation I have had with my doctor."

"Reading the notes can only make me come to my appointments better prepared and help my team understand what issues are important to me and what I need them to hear," wrote another patient.

"Even though this is a small pilot initiative, our findings are heartening. We believe that providing easier access to visit notes and asking for feedback sends a powerful message of inclusivity to patients and families," says senior author, Sigall Bell, MD, OpenNotes Director of Patient Safety and Discovery. "This feedback gives us the ability to bring patient and family voices more consistently to health decisions, system design and patient activation tools so that patients can engage in ways that matter most to them."