OpenNotes: Research repository

Search for and review work conducted by OpenNotes faculty, scholars, and collaborators from a wide variety of settings in the U.S. and beyond.

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A step-by-step guide to peer review: a template for patients and novice reviewers

Salmi L, Blease C. A step-by-step guide to peer review: a template for patients and novice reviewers. BMJ Health & Care Informatics 2021;28:e100392. doi: 10.1136/bmjhci-2021-100392

The peer review template for patients and novice reviewers is a series of steps designed to create a workflow for the main components of peer review. While relatively novel, patient peer review has the potential to change the healthcare publishing paradigm. It can do this by helping researchers enlarge the pool of people who are welcome to read, understand and participate in healthcare research. Academic journals who are early adopters of patient peer review have already committed to placing a priority on using person-centred language in publicly available abstracts and focusing on translational and practical research.

“Let’s Talk About Your Note”: Using Open Notes as an Acceptance and Commitment Therapy Based Intervention in Mental Health Care

Smith C, Stavig A, McCann P, et al. “Let's Talk About Your Note”: Using Open Notes as an Acceptance and Commitment Therapy Based Intervention in Mental Health Care, Frontiers in Psychiatry. v12, 2021,10.3389/fpsyt.2021.704415

Open notes are now the norm in mental health care in the U.S. Despite clinician concerns, early experiences suggest that patients and clinicians stand to benefit from embracing this change. Future studies should investigate using open notes as a clinical intervention while incorporating core processes of experiential therapies. ACT provides a framework for using open notes as a clinical tool in mental health care.

Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study

Janssen SL, Venema-Taat N, Medlock S. Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study J Med Internet Res 2021;23(8):e27764

Dutch patients are interested in shared visit notes, but physicians have many concerns that should be addressed if shared notes are pursued. Physicians’ concerns should be addressed before shared notes are implemented. In hospitals where shared notes are implemented, the effects should be monitored (objectively, if possible) to determine whether the concerns raised by our participants have actualized into problems and whether the anticipated benefits are being realized.

OpenNotes: Anticipatory Guidance and Ethical Considerations for Pediatric Psychologists in Interprofessional Settings

Fogler J, Ratliff-Schaub K, McGuinn L, et al. OpenNotes: Anticipatory Guidance and Ethical Considerations for Pediatric Psychologists in Interprofessional Settings, Journal of Pediatric Psychology, 2021;, jsab091, https://doi.org/10.1093/jpepsy/jsab091

The OpenNotes era has ushered in the possibilities of greater patient and family collaboration in shared decision-making and reduced barriers to documentation sharing. However, it has raised new ethical and clinician documentation considerations. In addition to clinician education, patients and families could benefit from education around the purpose of clinical documentation, how to utilize OpenNotes, and the benefits of engaging in dialogue regarding the content and tone of documentation.

How do older patients with chronic conditions view reading open visit notes?

DesRoches C, Salmi L, Dong Z, et al. How do older patients with chronic conditions view reading open visit notes? J Am Geriatr Soc. 2021; 1- 10. https://doi.org/10.1111/jgs.17406

Authors examined the experiences with and perceptions of the effect of reading clinical outpatient visit notes on older adult patients with multiple chronic conditions at three healthcare organizations with significant experience sharing clinical notes with patients. The majority of respondents had read two or more clinical notes in the 12 months before the survey. Patients with more than two chronic conditions were more likely than those with fewer or none to report that reading their notes helped them remember their care plan, take their medications as prescribed, and understand and feel more in control of their medications. Very few patients reported feeling worried or confused about their health or medications due to reading their notes.

Open notes sounds great, but will a provider’s documentation change? An exploratory study of the effect of open notes on oncology documentation

Rahimian M, Warner J, Salmi L, et al. Open notes sounds great, but will a provider’s documentation change? An exploratory study of the effect of open notes on oncology documentation, JAMIA Open, Volume 4, Issue 3, July 2021, ooab051, https://doi.org/10.1093/jamiaopen/ooab051

This study evaluated whether implementing open notes at a large academic medical center was associated with changes in measures of the length and readability of progress notes written by hematology/oncology clinicians. After the implementation of open notes, progress notes and A&P sections became both longer and easier to read. This suggests clinician documenters may be responding to the perceived pressures of a transparent medical records environment.

Physician Use of Stigmatizing Language in Patient Medical Records

Park J, Saha S, Chee B, et al. Physician Use of Stigmatizing Language in Patient Medical Records. JAMA Netw Open. 2021;4(7):e2117052. doi:10.1001/jamanetworkopen.2021.17052

This qualitative study found that physicians express negative and positive attitudes toward patients when documenting in the medical record. Although often not explicit, this language could potentially transmit bias and affect the quality of care that patients subsequently receive. These findings suggest that increased physician awareness when writing and reading medical records is needed to prevent the perpetuation of negative bias in medical care.

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

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. Epub ahead of print. PMID: 33990427

We address the contrasting perceptions of this 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, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

Open Notes Become Law: A Challenge for Mental Health Practice

O’Neill S, Blease C, Delbanco T. Open Notes Become Law: A Challenge for Mental Health Practice. Psychiatric Services, 11 May 2021. doi:10.1176/appi.ps.202000782

Although benefits to patients’ having access to psychiatric notes have been documented, early studies involved patients’ access to hard copies they often reviewed in the presence of mental health professionals. … Clinicians worry about possible harms, and in surveys, many psychiatrists anticipate that patients will become confused, get angry, or decompensate when reading their notes. However, experience challenges the assumption that mental health notes should remain segregated because these patients “cannot handle it.” … Both anecdotally and in surveys, fears among clinicians have largely been unrealized, and we are not aware of any reports of harm to or legal action from patients accessing their mental health notes.

Changes in Clinician attitudes toward Sharing visit Notes: Surveys Pre-and Post-Implementation

Ralston JD, Yu O, Penfold RB. Changes in Clinician attitudes toward Sharing visit Notes: Surveys Pre-and Post-Implementation. Journal of General Internal Medicine. 2021. doi:10.1007/s11606-021-06729-1

Following implementation, more primary and specialty care clinicians agreed that sharing notes with patients online was beneficial overall. Fewer had concerns about more time needed for office visits or documentation. Most thought patients would worry more and reported being less candid in documentation.

Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts

Blease C, Torous J, Kharko A, et al. Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts. JMIR Ment Health 2021;8(4):e27397

This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.

Tobias Esch: Integrating OpenNotes and promoting self-management in primary care in Germany: The Witten Model

Esch, T. The BMJ Opinion. Integrating OpenNotes and promoting self-management in primary care in Germany: The Witten Mode. Published April 1, 2021.

In Germany, patients’ rights to access their health information has been enshrined in the Civil Code since February 2013. The right to “inspect medical records” in § 630 g states “The patient is on request to be permitted to inspect the complete medical records concerning him/her without delay to the extent that there are no considerable therapeutic grounds or third party rights at stake to warrant objections to inspection. The patient can also request electronic duplicates of the medical records.”

How Sharing Clinical Notes Affects the Patient-Physician Relationship

Rubin, R. How Sharing Clinical Notes Affects the Patient-Physician Relationship. JAMA. Published online April 7, 2021. doi:10.1001/jama.2021.4755

Tom Delbanco, MD, will never forget his “aha!” moment, even though it was nearly 50 years ago.
The patient sitting across from him had been referred to Delbanco for evaluation of hypertension. But Delbanco thought the man’s symptoms suggested he consumed more alcohol than he’d acknowledged.
Delbanco considered adding alcohol misuse to the patient’s “problems list,” but he stopped writing after realizing that the patient, a printer who set type by hand, was reading his notes upside down. Delbanco explained why he had stopped writing and informed the patient that he suspected he drank more than 2 beers a day. If that was the case, Delbanco added, it should be noted on his chart.

Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines

Blease, C.R., O'Neill, S.F., Torous, J., DesRoches, C.M. and Hagglund, M., 2021. Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines. The Journal of Nervous and Mental Disease, 209(4), pp.265-269.

In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as “open notes” is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates—with few exemptions—that providers offer patients access to their online notes.

New federal rule requires open notes: what do clinicians and patients need to know? Insights and suggestions from a neuro-oncologist, a neurosurgeon, and a person living with a brain tumor

Salmi L, Mansouri SA, Taylor LP. New federal rule requires open notes: what do clinicians and patients need to know? Insights and suggestions from a neuro-oncologist, a neurosurgeon, and a person living with a brain tumor. Neuro-Oncology Practice. 2021; npab014. https://doi.org/10.1093/nop/npab014

Starting April 5, 2021, a new US federal rule will be implemented as part of the 21st Century Cures Act that in part mandates patients will be able to access their test results, medication lists, referral information, and clinical notes rapidly and conveniently in electronic formats… “without delay.” As a result, it will be easier for patients to access the information in their records, including progress notes. … We know of no specific guidance nor formal study for neuro-oncologists and neurosurgeons on open notes, and there has been no formal study of brain tumor patients’ perceptions. Of 35 US institutions offering accredited neuro-oncology fellowships through the United Council of Neurologic Subspecialties, 26 report the capability of sharing notes with at least some patients, though the method of note sharing is unclear. For now, the authors offer suggestions for information that both neuro-oncology clinicians and patients want at their fingertips, as well as personal reflections on sharing and reading visit notes.

The 21st Century CURES Act in Pediatric Gastroenterology

Lee JA, Miller S, Mezoff E, et al. The 21st Century CURES Act in Pediatric Gastroenterology. J Pediatr Gastroenterol Nutr. 2021 Mar 11; Publish Ahead of Print. doi: 10.1097/MPG.0000000000003117

The information blocking (IB) prohibition component of the 21st Century CURES Act (21CCA) comes into effect April 5, 2021, which gives patients and their families near instant access to almost all clinical notes, lab results, and health data. … A committee of pediatric gastroenterologists reviewed the 21CCA regulation and compared local practice policies. Pediatric practitioners need to understand how age will affect local information release policies and to know which note types are released, paying special consideration to trainee notes and confidential information. Extraneous detail should be removed from notes, emotional labeling be avoided, and objective statements be made when referring to the care of other providers. Awareness of the 21CCA provides pediatric gastroenterologists with the opportunity to adapt their medical documentation practices to accommodate the new law.

Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness

Blease C, Dong Z, Torous J, et al. Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness. JAMA Netw Open. 2021;4(3):e212823. doi:10.1001/jamanetworkopen.2021.2823

Surveys show that clinicians worry that patients with mental health diagnoses will become anxious, confused, or upset after reading their visit notes. In this study, we examined how patients with a mental illness diagnosis who read at least 1 clinical note in the last 12 months perceived how reading the note affected their adherence to prescribed medication.

Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations.

Lam B, Bourgeois F, Dong Z, et al. Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations. J Am Med Inform Assoc. 2021 Mar 18;28(4):685-694. doi: 10.1093/jamia/ocaa293. PMID: 33367831; PMCID: PMC7973482.

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.

U.S. policy requires immediate release of records to patients: Patients and clinicians should embrace the opportunities

Salmi L, Blease C, Hägglund M, et al. U.S. policy requires immediate release of records to patients. BMJ. 2021; 372 :n426. doi: https://doi.org/10.1136/bmj.n426

On 5 April a new federal rule will require US healthcare providers to give patients access to all the health information in their electronic medical records without charge. This new information sharing rule from the 21st Century Cures Act of 2016 mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, on request. The US is not alone in providing patients with full online access to their electronic health records. In Sweden, patients gained access to their records between 2012 and 2018. Estonian citizens have had full access since 2005. The sharing of personal health information isn’t without precedent in the US: around 55 million people already have access to their online clinical notes, and many more have access to laboratory results and other parts of their records. But for some US clinicians, the new rule may feel like a shock.

Open Notes: New Federal Rules Promoting Open and Transparent Communication

Delbanco T, Wachenheim D. Open Notes: New Federal Rules Promoting Open and Transparent Communication. Jt Comm J Qual Saf. 2021. doi: https://doi.org/10.1016/j.jcjq.2021.02.004

Patients report understanding what they read, and few take issue or pose subsequent questions. When they do, concerns are often warranted. Indeed, when it comes to safety, two eyes on one record can be far more helpful than two eyes perusing 1,000 records. One in five patients report that they find an error, 40% of which they consider serious. Among doctors inviting patients to read their notes for more than a year, 25% reported patients describing errors that they, the doctors, judged serious. Given the potential for finding mistakes early and preventing subsequent harm, among attorneys, patients, and doctors themselves there is consensus that litigation in the aggregate may well decrease. We know of no instances so far of litigation resulting from what a patient read in a note. Patients report that open notes build trust, and positive relationships promote forgiveness, even if mistakes are made.