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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.
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.
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.
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.
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.
Patients who engage and participate actively in their health care appear to achieve better health outcomes and incur lower health care costs [
In 2010, the Robert Wood Johnson Foundation funded the OpenNotes initiative, designed initially to examine the feasibility and effects of having primary care physicians (PCPs) share their notes routinely with patients. For 12 months, PCPs invited patients registered on portals to read these notes and 105 doctors and 5500 of their patients subsequently completed surveys. Representing 3 geographically dispersed and very different health care settings, the respondents were highly positive, with patients reporting a wide range of clinically important benefits and doctors noting little impact on their workflow [
Following their initial limited experiment in primary care, the 3 institutions that originally piloted OpenNotes adopted the practice throughout, and many of their patients have grown accustomed to reading notes following visits to nearly all clinicians in their associated primary care, medical, surgical, and mental health practices. On the basis of the reports and observations over the past few years, we developed 4 primary hypotheses: (1) over time, patients would continue to report important benefits from reading visit notes; (2) patients would often share or discuss notes with others; (3) those traditionally at risk for experiencing substandard care would report the greatest benefit; and (4) patients and clinicians would communicate about these notes actively during visits. We report findings from a large survey of patients conducted in the institutions that participated in the pilot OpenNotes inquiry.
We conducted a Web-based survey of patients who had been seen in hospital offices and community practices at 3 health systems: Beth Israel Deaconess Medical Center (BIDMC), an urban academic health system in and around Boston; Geisinger, a large rural integrated health system in Pennsylvania; and University of Washington Medicine (UW) in Seattle, which includes both private and community-funded safety net practices affiliated with the University of Washington. All 3 systems participated in the original 2010-2011 OpenNotes pilot involving PCPs [
The survey included patients seen in primary care and specialty offices: at the hospital and 6 affiliated sites at BIDMC, at 3 hospitals and 9 freestanding offices at UW, and at 7 hospitals and 53 outlying practices at Geisinger. Eligible patients were aged 18 years or older, had logged into the portal at least once in the previous 12 months, and had at least 1 ambulatory visit note available in the previous 12 months. We excluded patients who had been invited to participate in focus groups or other surveys related to OpenNotes within the preceding 12 months. Using portal tracking data, we identified patients who had, and had not, accessed available visit notes in the previous 12 months and described them as readers and nonreaders, respectively. We did not exclude nonreaders because we wanted to gain some understanding of why they had not read the notes. BIDMC and UW included all eligible readers and a random sample of eligible nonreaders in the survey sample. For administrative reasons, Geisinger drew random samples from both groups, resulting in smaller samples than the other 2 sites. Across the 3 sites, 109,904 readers and 27,959 nonreaders were sent invitations for the survey. The Institutional Review Boards at BIDMC, Geisinger, and UW approved the survey and study protocol at their respective sites.
This survey draws heavily on questions used in the original demonstration project in primary care; its development has been previously described [
We surveyed patients between June and October 2017, using a Web-based survey platform, Survey Gizmo. Patients were sent invitations by email either to their portal accounts or to the personal email address associated with the accounts. Each patient’s invitation contained his or her study identification embedded in a unique link to the survey, and each study identification could be used only once. Following the original invitation, patients received 2 reminders 1 week apart if they had not completed the survey. Knowing that patients sometimes confuse notes with other parts of the medical record, or with the portal itself, we described clinical notes in both the survey invitation and in a survey question and we also showed a screenshot of the location of visit notes on their institutions’ portals to increase the likelihood that patients would report on visit notes. Knowing also that invitations might be opened by care partners rather than patients, each respondent had an option to complete the survey as a patient or as a care partner, and care partners were automatically linked to a different questionnaire. We offered respondents an incentive for completing the survey: a raffle of 50 prizes of US $25 or US $50 at each site.
To maximize the chances that we were including responses about clinical notes rather than another part of the record, as a final step, we excluded responses from patients whose self-report of note reading in the past 12 months did not match portal data; for example, patients reported they had read notes, but the portal tracking data showed they had not. We also excluded respondents who reported reading notes for a week or less, or did not answer the question about length of time reading notes, since our objective was to assess patients’ experiences over the prior 12 months. Except as noted in the tables, all questions included in this analysis had < 4% missing responses, and denominators include all nonmissing responses to each item. Items related to medication management are addressed in another paper [
Most items addressing potential benefits and risks asked for ratings on an 11-point scale, ranging from 0 (not at all important, confusing, or concerned) to 10 (extremely important, confusing, or concerned). Responses to these items were collapsed into 4 categories a priori for analysis: 0-1, 2-4, 5-7, and 8-10, and we reported the 8-10 category as
Using percentages and chi-square tests, we compared respondents with nonrespondents using administrative data available at each institution: age and sex at all 3 sites, Hispanic ethnicity at Geisinger and UW, and insurance type at BIDMC and Geisinger.
We used descriptive statistics to examine respondents’ sociodemographic and health characteristics and experiences with note reading, both overall and stratified by study site. We used the chi-square test for independence (degrees of freedom: row-1 × column-1) to test for differences according to demographic characteristics in patients’ experiences in note reading. We performed a multivariable analysis using log Poisson regression models to estimate overall relative risks and 95% CIs for reporting benefits as very important according to patient characteristics, adjusted for other sociodemographic and health characteristics and number of notes read. Owing to the large sample size, we expected even slight differences between groups to be statistically significant. Therefore, we interpreted intercategory differences in proportions or relative risks of 10% or more as meaningful differences. All analyses were completed using SAS software version 9.4 (SAS Institute Inc).
Of 136,815 patients who received survey invitations, 21.68% (29,656/136,815) responded; 28,782 were patients, and 874 were care partners (
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; 53.06% (15,271/28,782) were employed; and 14.30% (4115/28,782) reported fair or poor general health. Overall, 64.92% (18,685/28,782) had completed college, but the sites differed substantially: the proportion of those with a high school education or less was 4.8% (655/13,613) at BIDMC and 5.4% (708/13,119) at UW, but 25.9% (530/2050) at Geisinger.
Study flow diagram. BIDMC: Beth Israel Deaconess Medical Center; UW: University of Washington Medicine.
After note reading exclusions, 23,710 responses were included in the analysis: 22,947 note readers and 763 nonreaders. Among note readers, three-quarters reported reading notes for a year or more and half reported reading 4 or more notes. In general, they reported locating notes easily on the portals and considered email notifications about new notes useful. About one-third of readers at BIDMC (4065/11,899, 34.16%) and UW (2998/9719, 30.85%), but only 20.1% (237/1178) at Geisinger, reported mentioning to their clinicians that they had read a note, and about the same proportion (7324/22,798, 32.13%) said they were encouraged by their clinicians to read notes. Among those who were encouraged, 60% read 4 or more notes compared with 46% of those who were not encouraged to read notes. In total, 37.74% (8588/22,753) reported sharing or discussing a note with a family member or someone else. Overall, 98.46% (22,593/22,947) of readers thought making notes available to patients a good idea, and 62.38% (13,427/21,525) said access to visit notes would be very important in choosing a future provider.
As shown in
We found meaningful differences (≥ 10%) in patients’ perceptions of the benefits of reading notes according to sociodemographic characteristics (
Few patients reported being very confused or more worried from reading notes, with only minor differences according to sociodemographic characteristics (
After adjusting for other factors, education level continued to be inversely associated with patient ratings of the importance of note reading for all 6 benefits (
When we asked the 763 nonreaders about the main reason they had not looked at visit notes, about half selected,
Benefits and risks of reading notes. BIDMC: Beth Israel Deaconess Medical Center; UW: University of Washington Medicine.
Proportion of patients identifying notes as
Demographics | Taking care of healtha | Active role in carea,b | Feeling in control of carea | Making the most of visitsa,b | Remembering the plan of carea | Preparing for visitsa | |||||||
|
n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | |||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
18-24 | 436 (58.80) |
|
233 (53.60) |
|
498 (67.10) |
|
227 (52.30) |
|
473 (63.80) |
|
303 (40.80) |
|
|
25-44 | 3358 (67.63) | 1471 (62.38) | 3452 (69.54) | 1392 (59.06) | 3263 (65.75) | 2249 (45.32) | ||||||
|
45-64 | 7073 (75.47) | 2453 (66.07) | 6652 (70.99) | 2411 (64.86) | 6285 (67.07) | 4893 (52.22) | ||||||
|
65+ | 5487 (73.74) | 1977 (64.88) | 5124 (68.88) | 2003 (65.76) | 4800 (64.52) | 3901 (52.44) | ||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Female | 10,376 (72.96) |
|
3954 (65.99) |
|
10,212 (71.82) |
|
3829 (63.87) |
|
9604 (67.54) |
|
7217 (50.76) | |
|
Male | 5978 (72.04) | 2180 (61.22) | 5514 (66.46) | 2204 (61.93) | 5217 (62.89) | 4129 (49.76) | ||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
White | 13,012 (72.24) |
|
4757 (64.03) |
|
12,523 (69.53) |
|
4653 (62.63) |
|
11,726 (65.1) |
|
8918 (49.51) | |
|
Black | 455 (83.80) | 93 (73.00) | 436 (80.30) | 93 (73.00) | 423 (77.90) | 342 (63.00) | ||||||
|
Asian | 824 (76.60) | 433 (67.30) | 797 (74.10) | 443 (68.90) | 777 (72.20) | 597 (55.50) | ||||||
|
Other | 535 (76.00) | 236 (68.80) | 522 (74.20) | 233 (67.90) | 511 (72.60) | 424 (60.20) | ||||||
|
Multiple races | 578 (75.70) | 322 (69.00) | 560 (73.30) | 317 (67.90) | 535 (70.00) | 420 (55.00) | ||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Hispanic or |
626 (80.50) |
|
217 (67.40) |
|
612 (78.70) |
|
210 (65.20) |
|
599 (77.00) |
|
472 (60.70) | |
|
Non-Hispanic | 14,845 (72.69) | 5641 (64.66) | 14,282 (69.93) | 5545 (63.56) | 13,426 (65.74) | 10,271 (50.29) | ||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Masters or |
5713 (71.33) |
|
1958 (62.12) |
|
5410 (67.55) |
|
1923 (61.01) |
|
4873 (60.84) |
|
3700 (46.20) | |
|
4-year college degree or some graduate school | 5210 (71.33) | 2052 (64.33) | 5101 (69.84) | 2018 (63.26) | 4824 (66.05) | 3526 (48.27) | ||||||
|
Some college or technical school | 3591 (76.40) | 1563 (68.07) | 3450 (73.40) | 1533 (66.77) | 3413 (72.62) | 2719 (57.85) | ||||||
|
High school or less | 1113 (79.73) | 335 (68.90) | 106 (76.50) | 336 (69.10) | 1053 (75.43) | 902 (64.60) | ||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Other | 372 (80.50) |
|
142 (72.10) |
|
361 (78.10) |
|
146 (74.10) |
|
357 (77.30) |
|
315 (68.20) | |
|
English | 15,136 (72.84) | 5728 (64.58) | 14,567 (70.10) | 5627 (63.44) | 13,700 (65.93) | 10,466 (50.36) | ||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Excellent, very good, or good | 13,134 (72.76) |
|
4853 (65.09) |
|
12,717 (70.45) |
|
4752 (63.73) |
|
11,853 (65.66) |
|
9050 (50.14) | |
|
Fair or poor | 2452 (74.21) | 1047 (63.38) | 2275 (68.86) | 1052 (63.68) | 2283 (69.10) | 1778 (53.81) | ||||||
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
1 | 869 (54.80) |
|
429 (51.40) |
|
892 (56.20) |
|
421 (50.40) |
|
830 (52.30) |
|
552 (34.80) | |
|
2 or 3 | 5815 (66.86) | 2244 (59.81) | 5619 (64.64) | 2176 (57.96) | 5251 (60.40) | 3780 (43.48) | ||||||
|
4 or more | 9098 (80.56) | 3223 (71.34) | 867 6 (76.83) | 3202 (70.89) | 8194 (72.55) | 6615 (58.59) | ||||||
|
Do not know or not sure | 572 (60.70) | 238 (53.00) | 539 (57.20) | 234 (52.20) | 546 (57.90) | 399 (42.30) |
aAnswering 8 to 10 on a 0-10 scale.
bOnly asked at University of Washington Medicine.
c
Proportions of patients reporting risks from reading notes.
Demographics | Notes were very confusinga | Very concerned about privacya | More worried after reading notesb | ||||
n (%) | n (%) | n (%) | |||||
|
|
|
|
|
|
|
|
|
18-24 | 8 (1.00) |
|
48 (7.00) |
|
46 (6.00) | |
|
25-44 | 112 (2.30) | 433 (9.00) | 256 (5.20) | |||
|
45-64 | 285 (3.10) | 1284 (13.96) | 471 (5.10) | |||
|
65+ | 332 (4.50) | 764 (10.40) | 305 (4.10) | |||
|
|
|
|
|
|
|
|
|
Female | 481 (3.40) |
|
1488 (10.68) |
|
721 (5.10) | |
|
Male | 256 (3.10) | 1041 (12.81) | 357 (4.40) | |||
|
|
|
|
|
|
|
|
|
White | 570 (3.20) |
|
1828 (10.10) |
|
807 (4.50) | |
|
Black | 17 (3.10) | 104 (19.20) | 32 (6.00) | |||
|
Asian | 42 (4.00) | 174 (16.20) | 65 (6.00) | |||
|
Other | 25 (4.00) | 129 (18.30) | 50 (7.00) | |||
|
Multiple races | 25 (3.00) | 105 (13.70) | 45 (6.00) | |||
|
|
|
|
|
|
|
|
|
Hispanic or Latino | 23 (3.00) |
|
101 (13.00) |
|
43 (6.00) | |
|
Non-Hispanic | 659 (3.20) | 2280 (11.16) | 962 (4.70) | |||
|
|
|
|
|
|
|
|
|
Master’s or doctoral degree | 218 (2.70) |
|
891 (11.10) |
|
330 (4.10) | |
|
4-year college degree or some graduate school | 208 (2.90) |
|
796 (10.90) |
|
359 (4.90) |
|
|
Some college or technical school | 183 (3.90) |
|
585 (12.50) |
|
245 (5.20) |
|
|
High school or less | 78 (6.00) |
|
149 (10.70) |
|
82 (6.00) |
|
|
|
|
|
|
|
|
|
|
Other | 21 (5.00) |
|
67 (15.00) |
|
29 (6.00) |
|
|
English | 664 (3.20) |
|
2327 (11.20) |
|
978 (4.70) |
|
|
|
|
|
|
|
|
|
|
Excellent, very good, or good | 547 (3.00) |
|
1996 (11.06) |
|
710 (3.90) | |
|
Fair or poor | 138 (4.20) |
|
429 (13.00) |
|
301 (9.10) |
|
|
|
|
|
|
|
|
|
|
1 | 33 (2.00) |
|
165 (10.70) |
|
51 (3.00) | |
|
2 or 3 | 239 (2.80) |
|
904 (10.60) |
|
369 (4.30) |
|
|
4 or more | 420 (3.80) |
|
1331 (12.02) |
|
614 (5.50) |
|
|
Do not know or not sure | 45 (5.00) |
|
129 (14.50) |
|
44 (5.00) |
|
aProportion answering 8 to 10 on a 0-10 scale.
bProportion answering
c
Adjusted relative risk and 95% CI of identifying notes as very important for potential benefits.
Demographics | Taking care of healtha , risk ratio (95% CI) | Having an active role in carea, risk ratio (95% CI) | Feeling in control of carea, risk ratio (95% CI) | Making the most of visitsa, risk ratio (95% CI) | Remembering the plan of carea, risk ratio (95% CI) | Preparing for office visitsa, risk ratio (95% CI) | |
|
|||||||
|
18-24 | 1.00 (refd) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) |
|
25-44 | 1.14 (1.07-1.22) | 1.18 (1.07-1.29) | 1.04 (0.99-1.10) | 1.16 (1.05-1.28) | 1.05 (0.99-1.12) | 1.14 (1.03-1.25) |
|
45-64 | 1.27 (1.20-1.36) | 1.24 (1.13-1.36) | 1.06 (1.01-1.12) | 1.28 (1.16-1.40) | 1.07 (1.01-1.14) | 1.30 (1.18-1.42) |
|
65+ | 1.25 (1.18-1.33) | 1.25 (1.14-1.38) | 1.05 (0.99-1.11) | 1.32 (1.2-1.46) | 1.05 (0.99-1.11) | 1.33 (1.21-1.45) |
|
|||||||
|
Male | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) |
|
Female | 1.02 (1.00-1.04) | 1.08 (1.04-1.11) | 1.07 (1.05-1.09) | 1.04 (1.01-1.08) | 1.06 (1.04-1.08) | 1.02 (1.00-1.05) |
|
|||||||
|
White | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (rref) | 1.00 (ref) |
|
Black | 1.13 (1.09-1.18) | 1.11 (1.00-1.24) | 1.11 (1.07-1.16) | 1.14 (1.03-1.27) | 1.14 (1.08-1.19) | 1.22 (1.14-1.30) |
|
Asian | 1.11 (1.07-1.15) | 1.08 (1.02-1.15) | 1.07 (1.03-1.11) | 1.15 (1.08-1.22) | 1.12 (1.08-1.17) | 1.18 (1.11-1.25) |
|
Multiple races | 1.05 (1.01-1.10) | 1.07 (1.01-1.14) | 1.04 (0.99-1.08) | 1.10 (1.03-1.17) | 1.04 (0.99-1.09) | 1.10 (1.03-1.18) |
|
Other | 1.02 (0.98-1.07) | 1.05 (0.98-1.14) | 1.04 (0.99-1.09) | 1.06 (0.98-1.15) | 1.05 (1.00-1.10) | 1.14 (1.07-1.22) |
|
|||||||
|
Master’s or doctoral degree | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) |
|
4-year degree or some grad school | 1.01 (0.99-1.03) | 1.05 (1.01-1.09) | 1.03 (1.01-1.06) | 1.05 (1.01-1.09) | 1.08 (1.06-1.11) | 1.06 (1.02-1.09) |
|
Some college or technical school | 1.06 (1.04-1.08) | 1.09 (1.05-1.14) | 1.08 (1.06-1.11) | 1.09 (1.05-1.14) | 1.17 (1.14-1.20) | 1.23 (1.18-1.27) |
|
High school or less | 1.11 (1.08-1.14) | 1.12 (1.05-1.20) | 1.15 (1.11-1.18) | 1.14 (1.07-1.22) | 1.23 (1.19-1.27) | 1.37 (1.31-1.44) |
|
|||||||
|
Non-Hispanic | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) |
|
Hispanic or Latino | 1.11 (1.07-1.16) | 1.02 (0.94-1.11) | 1.08 (1.04-1.13) | 1.02 (0.94-1.11) | 1.11 (1.07-1.16) | 1.14 (1.07-1.22) |
|
|||||||
|
Excellent or very good | 1.0 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) |
|
Good | 0.95 (0.93-0.98) | 0.91 (0.87-0.95) | 0.91 (0.88-0.93) | 0.92 (0.88-0.96) | 0.99 (0.96-1.02) | 0.95 (0.92-0.99) |
|
Fair or poor | 0.98 (0.96-1.00) | 0.96 (0.93-1.00) | 0.95 (0.93-0.96) | 0.95 (0.92-0.98) | 1.01 (0.98-1.03) | 0.99 (0.96-1.02) |
|
|||||||
|
English | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) |
|
Other | 1.07 (1.02-1.13) | 1.09 (0.99-1.20) | 1.09 (1.04-1.15) | 1.12 (1.03-1.23) | 1.11 (1.06-1.18) | 1.28 (1.19-1.37) |
|
|||||||
|
1 | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) | 1.00 (ref) |
|
2-3 | 1.20 (1.14-1.26) | 1.16 (1.08-1.25) | 1.15 (1.09-1.20) | 1.15 (1.07-1.24) | 1.14 (1.09-1.20) | 1.23 (1.14-1.32) |
|
4+ | 1.44 (1.37-1.51) | 1.38 (1.29-1.48) | 1.37 (1.31-1.43) | 1.40 (1.30-1.51) | 1.36 (1.30-1.43) | 1.62 (1.51-1.74) |
|
Do not know | 1.08 (1.01-1.16) | 1.03 (0.92-1.15) | 1.02 (0.95-1.10) | 1.04 (0.93-1.17) | 1.07 (0.99-1.15) | 1.15 (1.03-1.28) |
aAnswering 8 to 10 on a 0-10 scale.
bObtained from log Poisson regression adjusted for age, sex, race, education, ethnicity, language, self-reported health, and number of notes read.
c22,947 patients included in the model with no missing data on the dependent or independent variable.
dref: reference group.
In this study, the largest assessment to date of patients who read a wide variety of clinicians’ notes over time, patients report that reading clinical notes brings them substantial benefit. The respondents represent urban and rural settings, varying education levels, and broad age and racial distributions, and they had access to notes composed by most clinicians providing primary care and ambulatory care in medical, surgical, and mental health specialties. About two-thirds of patients describe notes as extremely important in increasing their sense of control, improving recall and understanding of their plans for care, and better preparing them for visits. Few reported confusion or increased worries, and those patients from medically underserved groups reported the most benefit. Whether or not they chose to review their notes, patients overwhelmingly approved the practice, with a majority reporting that access to notes would be extremely important in determining their future choice of clinicians. On the contrary, only a third of patients recalled discussing their notes during visits or having their clinicians recommend that they read them.
These reports from almost 23,000 patients who read their notes amplify and reinforce the findings from smaller, more targeted, and shorter studies within primary care practices and discrete clinical specialties [
Focusing on clinically important process measures, these results strongly suggest that transparency helps patients feel more engaged in their care. This is an important finding, given that a growing body of evidence indicates that engaged patients are more likely to adhere to treatment plans and medications, follow through on screening and prevention protocols, detect and prevent errors, and adopt more effective management strategies for chronic illnesses [
Although the time-honored principle of patient-clinician confidentiality is not in itself affected by open notes, it is up to patients to decide whether or not to disclose their medical information to others. More than a third of respondents reported sharing notes with someone else, almost twice the rate reported in 2012 in the study of primary care patients in the same institutions [
In this survey, patients who are potentially the most vulnerable—those who are older, less educated, non-white, Hispanic, or not English speakers at home—reported the most benefit. By virtue, both of taking the initiative to sign onto a patient portal and reading their notes, they may not be representative of other Americans with similar demographics, as is true for everyone in our sample. But this finding extends and amplifies findings in earlier inquiries [
As some of our findings suggest, embedding open notes into clinical practice faces many challenges. Even in these 3
This is a cross-sectional study examining patients’ self-reported experiences from only 3 regions of the United States, and results may not be generalizable to other regions or practices. Moreover, the response rate was modest, although it was similar to the response rate in a recent Consumer Assessment of Healthcare Provider and Systems survey [
Some argue today that fully open medical records are simply
At a time when medical practice in the United States is moving toward shared notes as a new standard, the patients participating in this study offer both affirmative and provocative reports, but building shared notes into the fabric of care remains a work in progress.
Beth Israel Deaconess Medical Center
primary care physician
University of Washington Medicine
The authors thank the Robert Wood Johnson Foundation, Gordon and Betty Moore Foundation, Peterson Center on Healthcare, and Cambia Health Foundation for their financial support, as well as James Ralston, MD, MPH, Lee Hargraves, PhD, and Julie A Wright, PhD, for insightful comments on drafts of the questionnaire. The authors are also grateful to the patients for their input and responses and to all the colleagues on the OpenNotes team.
All authors had financial support for the submitted work from the Robert Wood Johnson Foundation, Gordon and Betty Moore Foundation, Peterson Center on Healthcare, and Cambia Health Foundation. The funders had no role in designing or conducting the study, analyzing the data, preparing the manuscript, or deciding to submit this manuscript for publication.