12 Essential Publications on Open Notes
As the 21st Century Cures Act ‘information blocking’ rule takes effect, many clinicians around the U.S. are for the first time having progress notes read by their patients and care partners. Here we share 12 publications that may help health professionals gain deeper understanding of this new practice… and its effects.
OpenNotes—funded entirely by philanthropy and grants—is based at Beth Israel Deaconess Medical Center and Harvard Medical School in Boston, MA. Joined by investigators around the country, we have been studying the concept of open progress notes in ambulatory care settings (‘open notes’) since the first 3-site demonstration project mounted in 2010. Today, more than 100 peer-reviewed publications addressing this complex topic are in circulation.
Links to almost all publications about open notes can be found and sorted via the OpenNotes Research page at opennotes.org/research. However, the research repository is growing, and those new to the concept might not know where to start.
Researchers on the OpenNotes team chose among their publications, selecting both those with frequent citations in the academic literature and examples that seek to answer especially relevant questions in the age of the Information Blocking rule. The 12 publications listed below can also be found on the OpenNotes Research page by clicking the “Greatest Hits” filter.
Note: Most publications below are open access. Publications behind a publisher paywall may often be acquired by contacting the corresponding author listed on the journal website.
2012 ORIGINAL RESEARCH:
The first findings: What happens when patients read their doctors’ notes?
Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead, Annals of Internal Medicine (open access)
Researchers conducted a quasi-experimental study (“OpenNotes”), in which more than 100 primary care physicians (PCPs) at 3 sites volunteered to invite more than 20,000 of their patients to review online the notes that the doctors wrote and signed after an office visit.
Delbanco T*, Walker J*, Bell SK, et al. Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Ann Intern Med. 2012; 157 (7): 461-470 (Dr. Delbanco and Ms. Walker contributed equally as first authors)
2015 ORIGINAL RESEARCH:
Documentation errors: the views of patients and doctors
When Doctors Share Visit Notes with Patients: A Study of Patient and Doctor Perceptions of Documentation Errors, Safety Opportunities and the Patient–Doctor Relationship, BMJ Quality & Safety (behind paywall; contact corresponding author for access)
In this study, patient respondents (4592) reported that they read notes to be better informed and because they were curious; and about a third read notes to check accuracy. In total, 7% (331) of patients reported contacting their doctor’s office about their note. Of these, 29% perceived an error, and 85% were satisfied with its resolution. Nearly all patients reported feeling better (37%) or the same (62%) about their doctor. Patients who were older (>63), male, non-white, had fair/poor self-reported health or had less formal education were more likely to report feeling better about their doctor. Among doctors, 26% anticipated documentation errors, and 44% thought patients would disagree with notes. After a year, 53% believed patient satisfaction increased, and 51% thought patients trusted them more. None reported ordering more tests or referrals.
Bell S, Mejilla R, Anselmo M, et al., When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient–doctor relationship, BMJ Qual Saf doi:10.1136/bmjqs-2015-004697
2016 EDITORIAL COMMENTARY:
Tips for doctors whose patients may read their notes
Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects, The American Journal of Medicine (open access)
At the time this commentary was written, patients had unprecedented online access to their medical records. More than 6 million Americans could now read their doctors’ notes via patient portals, and continued rapid growth was likely. Authors believed sharing notes with patients might yield important health benefits, including increased patient empowerment and improved medication adherence. Authors working in open notes environments picked up on how seeing written information, including notes, helped patients remember the plan of care, reinforced patients’ positive behaviors, and strengthened the patient–doctor alliance.
Klein J, Jackson S, Bell S, et al., The American Journal of Medicine, October 2016, Volume 129, Issue 10, 101 -1021
2017 ORIGINAL RESEARCH:
What do care partners think of reading open notes?
Inviting Patients and Care Partners to Read Doctors’ Notes: Open Notes and Shared Access to Electronic Medical Records, Journal of the American Medical Informatics Association (open access)
This study explored the care partner view of open notes. In general, care partners (caregivers) were more likely to access and use patient portal functionality and reported improved communication with patients’ providers at follow-up. The findings suggested that offering patients and care partners access to doctors’ notes was not only acceptable, but also improved communication and patients’ confidence in managing their care.
Wolff J, Darer J, Berger A, et al. Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records. Journal of the American Medical Informatics Association, 24(e1), e166-e172. April, 2017
2019 ORIGINAL RESEARCH:
Seven years after the first 3-site study, patient experiences with open notes at the original study sites
OpenNotes After 7 Years: Patient Experiences with Ongoing Access to Their Clinicians’ Outpatient Visit Notes, Journal of Medical Internet Research (open access)
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 open notes to nearly all clinicians in primary care, medical, and surgical specialty practices. This study asked both clinicians and patients their current views on open progress notes in all ambulatory care settings.
Walker J, Leveille S, Bell S, et al., OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes, J Med Internet Res 2019;21(5):e13876
2019 ORIGINAL RESEARCH:
Relationships of open notes to patients’ use of medications
Patients Managing Medications and Reading Their Visit Notes: A Survey of Open Notes Participants, Annals of Internal Medicine (behind paywall; contact corresponding author for access)
The authors examined patients’ perceptions of how note reading affects factors related to medication adherence. In addition, they sought to understand patient engagement with online medication lists and their willingness to participate in keeping those lists correct and up to date.
DesRoches C, Bell S, Dong Z, et al., Patients Managing Medications and Reading Their Visit Notes: A Survey of OpenNotes Participants, Ann Intern Med. 2019. [Epub ahead of print 28 May 2019] doi: 10.7326/M18-3197
2020 ORIGINAL RESEARCH:
After extended experiences, how do clinicians view open notes?
The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients, JAMA Network Open (open access)
In this web-based survey study of 1628 clinicians, most viewed note sharing positively: 74% agreed open notes is a “good idea,” and 74% viewed shared notes as useful for engaging patients in their care. However, 37% of physicians surveyed reported spending more time in documentation. Physicians with more years in practice and fewer hours spent in patient care had more positive opinions overall.
DesRoches C, Leveille S, Bell S, et al., The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients, JAMA Netw Open. 2020;3(3):e201753. doi:10.1001/jamanetworkopen.2020.1753
2020 ORIGINAL RESEARCH: Co-generating notes in telemedicine
Covid-19 as Innovation Accelerator: Cogenerating Telemedicine Visit Notes with Patients, NEJM Catalyst (open access)
As the Covid-19 pandemic has accelerated the adoption of telemedicine, BIDMC’s primary care practice implemented an initiative called OurNotes. In addition to inviting patients to review notes before and after a visit, this effort also engaged patients before the telemedicine visit by soliciting important prework information through an electronic form, and by enabling coproduction of the visit note.
Kriegel G, Bell S, Delbanco T, et al. Covid-19 as Innovation Accelerator: Cogenerating Telemedicine Visit Notes with Patients, NEJM Catalyst. 2020. DOI: 10.1056/CAT.20.0154
2020 ORIGINAL RESEARCH:
Patients report on their experiences with spotting errors in notes
Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes, JAMA Network Open (open access)
Of patients who read their open progress notes, 1 in 5 patients report finding an inaccuracy—40% of which patients perceive as being serious. As health information transparency increases, patients may perceive important errors in their visit notes, and inviting them to report mistakes that they believe are very serious may be associated with improved record accuracy and patient engagement in safety.
Bell S, Delbanco T, Elmore J, et al., Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes, JAMA Netw Open. 2020;3(6):e205867. doi:10.1001/jamanetworkopen.2020.5867
2020 RESEARCH LETTER:
Among patients with malignancies, how do their views about open notes compare to those of specialists in oncology?
Open Notes in Oncology: Patient versus Oncology Clinician Views, Cancer Cell (behind paywall; contact corresponding author for access)
Most oncology clinician views about open notes differ from those of patients. For example, 70% percent of clinicians agreed that open notes are a “good idea,” while 98% of patients endorsed this practice. Further, 44% of oncology clinicians believed cancer patients would be confused by notes; just 4% of patients reported feeling confused after reading. Patient and clinician views about open notes in oncology are not aligned, with patients expressing considerably more enthusiasm.
Salmi L, Dong Z, Yuh B, et al., Open Notes in Oncology: Patient versus Oncology Clinician Views, Cancer Cell. 2020;38(6):767-768. doi: 10.1016/j.ccell.2020.09.016
2021 ORIGINAL RESEARCH:
What may offend patients when they read their progress notes?
Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes? Journal of General Internal Medicine (behind paywall; contact corresponding author for access)
In this survey, 1 in 10 patient respondents reported feeling judged/offended by something they read in an outpatient note due to the perception that it contained errors, surprises, labeling, or evidence of disrespect. The content and tone in a progress note may be particularly important to patients in poor health. Enhanced clinician awareness of the patient perspective may promote an improved medical lexicon, reduce the transmission of bias to other clinicians, and reinforce healing relationships.
Fernandez L, Fossa A, Zhiyong D, et al. Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?. J GEN INTERN MED (2021). https://doi.org/10.1007/s11606-020-06432-7
2021 EXTENDED ESSAY:
Ethical implications of information blocking…a form of harm?
Patients, clinicians and open notes: information blocking as a case of epistemic injustice, BMJ Journal of Medical Ethics (open access)
In this publication, the authors address contrasting perceptions of open notes as a practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, they argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice, and conclude that the marginalization of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. [Ed: Epistemic injustice is an area of philosophical study, and occurs when someone is harmed—specifically in their capacity as a “knower.”]
Blease C, Salmi L, Rexhepi H, et al. Patients, clinicians and open notes: information blocking as a case of epistemic injustice. J Med Ethics. 2021 May 14:medethics-2021-107275. doi: 10.1136/medethics-2021-107275
