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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.

Don’t Fear Patients Reading Their Clinical Notes: Opinion

Delbanco T, Blease C. Medscape.com. Don't fear patients reading their clinical notes: Opinion. https://www.medscape.com/viewarticle/945473. Published February 11, 2011. Accessed February 16, 2011.

Doctors are learning about new rules coming this April that encourage open and transparent communication among patients, families, and clinicians. The rules, putting into effect the bipartisan 21st Century Cures Act, mandate offering patients access to notes (“open notes”) written by clinicians in electronic medical records. … We believe that clinicians should embrace the spirit of the rules and view them also as HIPAA catching up with a computerized universe. As the new practice takes hold, ambiguities will diminish as further experience and research evolve. Warner Slack, the first doctor to ask patients to talk to computers, opined that patients are the “largest and least utilized resource in healthcare.” Open and transparent communication through electronic medical records may mobilize patients (and their families) far more effectively. Patients will almost certainly benefit. Remembering Slack’s prophecy, we believe that clinicians will too.

Open Anesthesia Records: Guidance for Anesthesia Providers on Implementing the Cures Act

Ramaswamy P, Chin D, Robinowitz D. Open Anesthesia Records: Guidance for Anesthesia Providers on Implementing the Cures Act. ASA Monitor 2021; 85:e3–e4 doi: https://doi.org/10.1097/01.ASM.0000733900.18773.a4

Open anesthetic records may empower patients. Armed with previous anesthetic records, patients may be better prepared to communicate prior adverse events or side effects. We may also see more patients who seek the same “cocktail” of anesthetics that were provided to them in the past or may ask for the same anesthesia providers who have cared for them. Overall, patients should be able to better communicate their satisfaction or dissatisfaction with prior anesthetic experiences. Anesthesia providers will also have access to a wealth of important information, like airway management details, from prior out-of-network anesthetic records.

The Value of OpenNotes for Pediatric Patients, Their Families and Impact on the Patient–Physician Relationship

Sarabu C, Lee T, Hogan A, et al. The Value of OpenNotes for Pediatric Patients, Their Families and Impact on the Patient–Physician Relationship. Appl Clin Inform 2021; 12(01): 076-081 DOI: 10.1055/s-0040-1721781

Although limited by relatively low survey response rate, OpenNotes was well-received by parents of pediatric patients without untoward consequences. The main concerns pediatricians raise about OpenNotes proved to not be issues in the pediatric population. Our results demonstrate clear benefits to adoption of OpenNotes. This provides reassurance that the transition to sharing notes with pediatric patients can be successful and value additive.

Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?

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

One in 10 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 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.

Impact of Patient Access to Online VA Notes on Healthcare Utilization and Clinician Documentation: A Retrospective Cohort Study

Blok A, Amante D, Hogan T, et al. Impact of Patient Access to Online VA Notes on Healthcare Utilization and Clinician Documentation: a Retrospective Cohort Study. J Gen Intern Med, January 14, 2021. https://doi.org/10.1007/s11606-020-06304-0

In an effort to foster patient engagement, some healthcare systems provide their patients with open notes, enabling them to access their clinical notes online. In January 2013, the Veterans Health Administration (VA) implemented online access to clinical notes (“VA Notes”) through the Blue Button feature of its patient portal.

Does Patient Access to Clinical Notes Change Documentation?

Blease C, Torous J, and Hägglund M, Opinion: Does patient access to clinical notes change documentation? November 2020. Frontiers in Public Health, 8, p.578

A variety of surveys have been conducted into patients’ and doctors’ experiences of open notes but much less is understood about the objective changes in documentation that may arise as a result of patient access. We review current research into open notes including clinicians’ reports on how they have modified their notes as a result of implementing the practice. Highlighting the potentially beneficial and harmful effects that different types of documentation changes might have on the therapeutic relationship and on patient outcomes, we argue that more research is needed to investigate objective changes in notes as a result of patient access.

Mobile Access and Adoption of the Swedish National Patient Portal

Hägglund M, Blease C, Scandurra I. Mobile Access and Adoption of the Swedish National Patient Portal. Studies in Health Technology and Informatics, November 2020, 275, pp.82-86.

Patient portals are used as a means to facilitate communication, performing administrative tasks, or accessing one’s health record. In a retrospective analysis of real-world data from the Swedish National Patient Portal 1177.se, we describe the rate of adoption over time, as well as how patterns of device usage have changed over time. In Jan 2013, 53% of all visits were made from a computer, and 38% from a mobile phone. By June 2020, 77% of all visits were made from a mobile phone and only 20% from a computer. These results underline the importance of designing responsive patient portals that allow patients to use any device without losing functionality or usability.

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