JMIR Publications

ABSTRACT

Background:

Following a 2010-2011 pilot intervention that offered primary care patients secure online portal access to their doctors’ office visit notes, these systems expanded “OpenNotes” to nearly all clinicians in primary care, medical and surgical specialty practices.

Objective:

To examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses and other clinicians.

Methods:

Three large US health systems in Boston, Seattle, and rural Pennsylvania conducted an online survey of adult patients using portal accounts who had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient perceptions of benefits, risks, and behaviors related to reading visit notes.

Results:

Among 136,815 patients who received invitations, 29,656 (21.68%) responded. Of the 28,782 patient respondents, 62.82% (18,081) were female, 72.90% (20,982) were aged 45 years or older, 76.94% (22,146) were white, and 14.30% (4115) reported fair or poor health. Among 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8,588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16354/22520, 72.62%), feeling in control of their care (15726/22515, 69.85%), and remembering the plan of care (14821/22516, 65.82%). Few were very confused (737/22304, 3.3%) or more worried (1078/22303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes, and a third told their clinicians they had read them. Less educated, non-white, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22593/22947, 98.46%) thought online access to visit notes a good idea, and 62.38% (13427/21525) rated this practice as very important for choosing a future provider.

Conclusions:

In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the US report particular benefit. Yet, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the US and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.