The DOI matches its Crossref record; 41 of the 43 references it cites were found in a registry or an index; none of the 40 sources its claims cite is checked for support yet.
Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations
Open accessAbstract
Background: Open notes invite patients and families to read ambulatory visit notes through the patient portal. Little is known about the extent to which they identify and speak up about perceived errors. Understanding the barriers to speaking up can inform quality improvements. Objective: To describe patient and family attitudes, experiences, and barriers related to speaking up about perceived serious note errors. Methods: Mixed method analysis of a 2016 electronic survey of patients and families at 2 northeast US academic medical centers. Participants had active patient portal accounts and at least 1 note available in the preceding 12 months. Results: 6913 adult patients (response rate 28%) and 3672 pediatric families (response rate 17%) completed the survey. In total, 8724/9392 (93%) agreed that reporting mistakes improves patient safety. Among 8648 participants who read a note, 1434 (17%) perceived ≥1 mistake. 627/1434 (44%) reported the mistake was serious and 342/627 (56%) contacted their provider. Participants who self-identified as Black or African American, Asian, “other,” or “multiple” race(s) (OR 0.50; 95% CI (0.26,0.97)) or those who reported poorer health (OR 0.58; 95% CI (0.37,0.90)) were each less likely to speak up than white or healthier respondents, respectively. The most common barriers to speaking up were not knowing how to report a mistake (61%) and avoiding perception as a “troublemaker” (34%). Qualitative analysis of 476 free-text suggestions revealed practical recommendations and proposed innovations for partnering with patients and families. Conclusions: About half of patients and families who perceived a serious mistake in their notes reported it. Identified barriers demonstrate modifiable issues such as establishing clear mechanisms for reporting and more challenging issues such as creating a supportive culture. Respondents offered new ideas for engaging patients and families in improving note accuracy.
Overview
CoChat Summary
TL;DR
In a mixed-methods survey of 10,252 patients and family members reading open notes, 17% perceived a mistake, 44% of those considered it serious, and 56% of those with a serious perceived error contacted the provider. Barriers included not knowing how to report and fear of being seen as a “troublemaker,” while respondents recommended clearer online reporting mechanisms and cultural change.
Key findings
- Among 8,648 participants who read at least 1 note, 1,434 (17%) identified ≥1 perceived mistake; 627/1,434 (44%) considered it serious, and 342/614 (56%) contacted the provider’s office, while 272/614 (44%) did not.
- Among 272 non-reporters of a serious perceived mistake, barriers were not knowing one could report a mistake (61%), not wanting to be perceived as a “troublemaker” (34%), not knowing whom to call or talk to (27%), being unsure if it was important (23%), worrying about annoying the provider (22%), and feeling nothing would be done (21%).
- In exploratory logistic regression among 442 respondents with a serious perceived mistake and demographic data, those self-identifying as Black or African American, Asian, other, or multiple race(s) (OR 0.50; 95% CI 0.26–0.97) and those reporting poorer health (OR 0.58; 95% CI 0.37–0.90) were less likely to contact the provider.
- Qualitative analysis of 476 free-text comments yielded 568 recommendations: 65% recommended clear instructions about how and whom to report to, 24% described needed cultural change, and 17% proposed innovations for reporting and fixing EHR mistakes.
Methods
- Mixed-method analysis of a 2016 electronic survey at 2 northeast US academic medical centers; eligible participants were adult patients and pediatric family portal account holders with at least 1 available open note in the prior 12 months.
- Invitations went to 24,722 adult patients and 21,579 pediatric patient families; 6,913 adults (28%) and 3,672 pediatric families (17%) completed the survey, yielding a 10,252-patient/family study population.
- Analyses included descriptive statistics, χ² tests, logistic regression for confidence finding mistakes and likelihood of contacting the provider, and qualitative coding of free-text recommendations by two researchers using a consensus codebook.
Limitations
- The paper states the response rate was low; a relatively small proportion reported a perceived error; most respondents were white, employed, and well-educated; race/ethnicity findings were exploratory with grouped categories due to small sample size; the study was limited to portal users; severity was judged by participants and not verified by chart review or clinician assessment; and age, mental health, preferred language, and health literacy were not examined.
- Evident from the text: the data are cross-sectional and self-reported, with no independent verification of perceived errors or reporting behavior, and the pediatric sample was predominantly parents or guardians rather than adolescent patients.
- Evident from the text: at the adult hospital only a random half of eligible patients were invited, and participant–nonparticipant comparisons were possible only at the adult hospital.
Model-written summary. Check it against the paper before relying on it.
Integrity signals
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Verification
Claims the paper makes
0 Valid · 0 Not valid · 20 Not checked · 69 Own results and interpretations
A result the paper reports from its own data — it cites no other source for it, so there is none to check. The quote shows it is in the paper.
In the paper
“21% felt that nothing would be done about it”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Barriers to speaking up about perceived serious mistakes in notes
plainn = 272- Asserted: passes — The authors put it forward as true.
- Checkable: passes — It can be checked against evidence.
- Load-bearing: unclear — It is unclear whether the paper’s conclusions depend on it.
- Based: passes — The paper gives a reason why it holds.
A result the paper reports from its own data — it cites no other source for it, so there is none to check. The quote shows it is in the paper.
In the paper
“Among these, 574/1343 (43%) volunteered free-text recommendations about what would help them speak up.”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Patient and family recommendations
plain- Asserted: passes — The authors put it forward as true.
- Checkable: passes — It can be checked against evidence.
- Load-bearing: unclear — It is unclear whether the paper’s conclusions depend on it.
- Based: passes — The paper gives a reason why it holds.
A result the paper reports from its own data — it cites no other source for it, so there is none to check. The quote shows it is in the paper.
In the paper
“We did not observe a significant difference in likelihood to report the mistake to the provider by respondent sex, ethnicity, or education”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Regression models: association between participant demographics and finding or reporting perceived serious mistakes
plainn = 627- Asserted: passes — The authors put it forward as true.
- Checkable: passes — It can be checked against evidence.
- Load-bearing: unclear — It is unclear whether the paper’s conclusions depend on it.
- Based: passes — The paper gives a reason why it holds.
A result the paper reports from its own data — it cites no other source for it, so there is none to check. The quote shows it is in the paper.
In the paper
“22% worried about annoying the provider”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Barriers to speaking up about perceived serious mistakes in notes
plainn = 272- Asserted: passes — The authors put it forward as true.
- Checkable: passes — It can be checked against evidence.
- Load-bearing: unclear — It is unclear whether the paper’s conclusions depend on it.
- Based: passes — The paper gives a reason why it holds.
A result the paper reports from its own data — it cites no other source for it, so there is none to check. The quote shows it is in the paper.
In the paper
“In our study of over 10 000 patients and families, roughly 1 in 5 respondents reported finding a mistake in visit notes and considered 40% of these to be serious.”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > DISCUSSION
plain- Asserted: passes — The authors put it forward as true.
- Checkable: passes — It can be checked against evidence.
- Load-bearing: passes — The paper’s conclusions depend on it.
- Based: passes — The paper gives a reason why it holds.
43 more claims
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- It may state two separate claims as one. 18
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
Each contradiction between two passages listed here was confirmed by an independent check.
Rated major: it would touch a result — a value a result rests on, reported and recomputed p-values on opposite sides of the significance level, two passages that conflict with no sign which is right, or a cited work retracted before this paper was published.
In the paper
“627/1434 (44%) reported the mistake was serious and 342/627 (56%) contacted their provider.”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Abstract
Reported 56 · recomputed 54.545455
Rated minor: it would not touch a result — a value no result rests on, a p-value that stays on the same side of the significance level, or a conflict that is clerical, resolved elsewhere in the paper, or outside its own findings.
In the paper
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > DISCUSSION
“More than 75% of respondents believed healthcare providers want to know about patient-identified mistakes.”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Participants
“6896 (73%) thought that healthcare providers want to know about mistakes.”
Rated minor: it would not touch a result — a value no result rests on, a p-value that stays on the same side of the significance level, or a conflict that is clerical, resolved elsewhere in the paper, or outside its own findings.
In the paper
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Abstract
“The most common barriers to speaking up were not knowing how to report a mistake (61%) and avoiding perception as a "troublemaker" (34%).”
§ Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations > Barriers to speaking up about perceived serious mistakes in notes
“The 3 most common barriers were: not knowing one could report a mistake (61%), not wanting to be perceived as a "troublemaker" (34%), and not knowing whom to call or talk to (27%).”
Citations
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Weissman, J. S., Schneider, E. C., Weingart, S. N., Epstein, A. M., David-Kasdan, J., Feibelmann, S., Annas, C. L., Ridley, N., Kirle, L., & Gatsonis, C. (2008) · Annals of Internal Medicine · doi:10.7326/0003-4819-149-2-200807150-00006 · Cited by 324
Disparities in Enrollment and Use of an Electronic Patient Portal
Goel, M. S., Brown, T. L., Williams, A., Hasnain-Wynia, R., Thompson, J. A., & Baker, D. W. (2011) · Journal of General Internal Medicine · doi:10.1007/s11606-011-1728-3 · Cited by 320
Shoaf, H. R. (2003) · Plastic Surgical Nursing · doi:10.1097/00006527-200323020-00009 · Cited by 283
Rapid implementation of a COVID-19 remote patient monitoring program
Annis, T., Pleasants, S., Hultman, G., Lindemann, E., Thompson, J. A., Billecke, S., Badlani, S., & Melton, G. B. (2020) · Journal of the American Medical Informatics Association · doi:10.1093/jamia/ocaa097 · Cited by 252
Research works printed but not linked: 2
- Muñana, 2019, Data Note: Public's Experiences with Electronic Health Records
- 2014, Safety is Personal: Partnering with Patients and Families for the Safest Care
Cited by
Biases in Electronic Health Records Data for Generating Real-World Evidence: An Overview
Al‐Sahab, B., Leviton, A., Loddenkemper, T., Paneth, N., & Zhang, B. (2023) · Journal of Healthcare Informatics Research · doi:10.1007/s41666-023-00153-2 · Cited by 81
Hagström, J., Blease, C., Haage, B., Scandurra, I., Hansson, S., & Hägglund, M. (2022) · Journal of Medical Internet Research · doi:10.2196/40328 · Cited by 51
Bell, S. K., Dong, J., Ngo, L. H., McGaffigan, P., Thomas, E. J., & Bourgeois, F. C. (2022) · BMJ Quality & Safety · doi:10.1136/bmjqs-2021-013937 · Cited by 44
Self-citationBell, S. K., Bourgeois, F. C., Dong, J., Gillespie, A., Ngo, L. H., Reader, T. W., Thomas, E. J., & DesRoches, C. M. (2022) · Milbank Quarterly · doi:10.1111/1468-0009.12593 · Cited by 39
Self-citationvan Kessel, R., Ranganathan, S., Anderson, M., McMillan, B., & Mossialos, E. A. (2024) · International Journal of Medical Informatics · doi:10.1016/j.ijmedinf.2024.105513 · Cited by 38
Metadata
- Authors
- Lam, B. D., Bourgeois, F., Dong, Z. J., & Bell, S. K.
- Affiliations
- Beth Israel Deaconess Medical Center (US)
- Boston Children's Hospital (US)
- Corresponding author
- Lam, Barbara D
- Venue
- Journal of the American Medical Informatics Association
- Publisher
- Oxford University Press (OUP)
- Published
- 2020-12-23
- Volume
- 28
- Issue
- 4
- Pages
- 685-694
- ISSN
- 1067-5027 (ISSN-L)
- 1527-974X
- PMC
- PMC7973482
- OpenAlex
- W3116523421
- Semantic Scholar
- 8e99981a1e19ec51a65ca6bb418fd33b4134d6ff
- Cited by
- 29
- References
- 43
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 5 · 2023: 7 · 2022: 9 · 2021: 3
- FWCI
- 3.48
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- public-domain
- Locations
- Journal of the American Medical Informatics Association (publishedVersion, public-domain)
- PubMed (publishedVersion)
- PubMed Central (publishedVersion)
- Funders
- CRICO
- Risk Management Foundation
- Harvard Medical Institutions
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Patient Safety and Medication Errors
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- open notes, patient portals, patient safety, speaking up, patient engagement, family involvement, outpatient care, racial disparities, patient-provider communication
- MeSH terms
- Data Accuracy, Patient Portals, Adult, Attitude to Health, Child, Ethnicity, Humans, Patient Participation, Professional-Family Relations, Surveys and Questionnaires, Patient Access to Records, Electronic Health Records
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Cite CoChat for the checks on this page, and the paper for its own findings.
- This page
- CoChat. (2026). Citation check: Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations. https://app.cochat.ai/papers/10.1093/jamia/ocaa293
- The paper
- Lam, B. D., Bourgeois, F., Dong, Z. J., & Bell, S. K. (2021). Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations. Journal of the American Medical Informatics Association. https://doi.org/10.1093/jamia/ocaa293
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Bibliographic data: Semantic Scholar, OpenAlex, Crossref.
Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).
Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.
