OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes

Abstract

Background Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. Objective The aim of this study was 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 A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. Results Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 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% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 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, nonwhite, 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 (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) 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 United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.

Half of the Finnish population accessed their own data: comprehensive access to personal health information online is a corner-stone of digital revolution in Finnish health and social care

“…Involving patients in their own care by allowing them an access to their PAEHR data is a trend seen in many places [4]. Easy access to personal health information has long been on the 'wish lists' of patients and their advocates [5][6][7][8]27]. Record access improves shared care management [7,[9][10][11][12].…”

“…Patients are offered access to their own health data on a national level only in a few countries, such as Australia, Canada, Denmark, Estonia, Finland, France, Iceland, New Zealand, Norway, Scotland, Singapore and Sweden [4]. Easy access to personal health information has long been on the wish lists of patients and their advocates, and modern health information technology, internet and secure patient accessible electronic health records (PAEHR) may dramatically increase possibilities for patients' access to their own data [5][6][7][8].…”

“…Access to PAEHR is likely to save time for patients and practices in primary healthcare [13]. In a year-long quasiexperimental trial among 105 primary care practitioners and their 13,564 patients, the patients accessed their visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue [5,6]. Concerns of professionals about privacy were unrealized and those about workload increase were only partly corroborated according to a systematic review [12].…”

Evaluation of provider documentation patterns as a tool to deliver ongoing patient‐centred diabetes education and support

“…38 Increasingly, completed clinic notes are available for review by the patient and may provide an additional opportunity for DM education and support. 39 The objective of this study was to investigate the frequency distribution of information providers deliver to people with DM during clinic visits based on the AADE7 guidelines by analysing the HPI and I&P sections in clinic notes. We also aimed to investigate whether the providers delivered DSME/S to people with DM based on patient characteristics of sex, age group, geographic region, type of diabetes, history of diagnosis of diabetes, comorbidities (eg, hypertension, hyperlipidaemia and coronary artery disease), insulin treatment, BMI and HbA1c.…”

“…HPI and I&P are preferably not auto‐populated, and are the sections where providers document patients' previous self‐management behaviours (HPI section) and suggestions for conducting self‐management (I&P section) . Increasingly, completed clinic notes are available for review by the patient and may provide an additional opportunity for DM education and support …”