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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.

Sharing Clinical Notes in Psychotherapy: A New Tool to Strengthen Patient Autonomy

Blease C, Walker J, Torous J, et al., Sharing Clinical Notes in Psychotherapy: A New Tool to Strengthen Patient Autonomy, Frontiers in Psychiatry, October 28, 2020. 11. 1095 doi 10.3389/fpsyt.2020.527872

Against the current shortcomings with disclosure practices in psychotherapy, healthcare is becoming more transparent and “open notes” —inviting patients to read their clinical notes via online portals—is a growing movement. Numerous health institutions in over a dozen countries have begun to share the health records with patients (5). In the USA, from November 2020, new federal rules mandate, with few exceptions, the sharing of medical notes; psychotherapy notes remain exempt from this ruling (6). Although fewer health organizations have chosen to share mental health notes (7), all patients have the right to understand their care (8). While many clinicians anticipate workflow problems from sharing notes (9, 10), studies suggest that clinicians do not experience major burdens to documentation practices (11–13).

Addressing the perceived challenges with informed consent processes in psychotherapy contexts, we propose that open notes may provide an important new strategy to strengthen patient autonomy and improve clinical outcomes without sacrificing professional autonomy.

Perception versus reality: Does provider documentation behavior change when clinic notes are shared electronically with patients?

Richards S, Carlson K, Matthias T, et al., Perception versus reality: Does provider documentation behavior change when clinic notes are shared electronically with patients?, International Journal of Medical Informatics, Volume 145, 2021, 104304, ISSN 1386-5056

Secure patient portals have improved patient access to information, including provider notes. Although there is evidence suggesting that electronic note sharing improves communication and care quality, some studies have reported provider concerns regarding note sharing.

Validation of a brief scale to assess ambulatory patients’ perceptions of reading visit notes: a scale development study

Wright J, Leveille S, Chimowitz H, et al., Validation of a brief scale to assess ambulatory patients’ perceptions of reading visit notes: a scale development study, BMJ Open 2020;10:e034517. doi: 10.1136/bmjopen-2019-034517

Four studies were used to evaluate the construct validity of a benefits and risks scale. Study 1 refined the items; study 2 evaluated underlying factor structure and identified the items; study 3 evaluated study 2 results in a separate sample; and study 4 examined factorial invariance of the developed scale across educational subsamples.

The findings suggest that the four-item benefits scale has excellent construct validity and preliminary evidence of generalising across different patient populations. Further scale development is needed to understand perceived risks of reading open notes.

New U.S. Law Mandates Access to Clinical Notes: Implications for Patients and Clinicians

Blease C, Walker J, DesRoches C, et al., New U.S. Law Mandates Access to Clinical Notes: Implications for Patients and Clinicians, Annals of Internal Medicine. October 13, 2020.

On 2 November 2020, new federal rules will implement the bipartisan 21st Century Cures Act that, in part, “. . . promotes patient access to their electronic health information, supports provider needs, advances innovation, and addresses industry-wide information blocking practices” (1). The rules forbid health care organizations, information technology vendors, and others from restricting patients’ access to their electronic health care data, or “information blocking” (Table). Although the Health Insurance Portability and Accountability Act gave patients the legal right to review their medical records, the new ruling goes further by giving them the right to access their electronic health records rapidly and conveniently . . .

When Patients Read Their Story in Clinical Notes

Gantzer HE. Annals of Internal Medicine. October 13, 2020. doi: 10.7326/M20-6632

… as Blease and colleagues point out in their article, the cloak that effectively covers many notes will be lifted on 2 November 2020, when the 21st Century Cures Act is implemented and patients are to have ready access to their medical record, including the clinical notes. Patients often misunderstand medical jargon. Will reading notes cause them confusion and distress? Physicians are already experiencing burnout from spending hours at the end of the day completing documentation for the electronic health record. Will writing notes with the realization that the patient may be reading them be one more burden for physicians?

Open Notes in Oncology: Patient versus Oncology Clinician Views

Salmi L, Dong Z, Yuh B, et al., Open Notes in Oncology: Patient versus Oncology Clinician Views, Cancer Cell, 2020, ISSN 1535-6108,

Beginning November 2, 2020, opening clinical notes to patients with cancer will no longer be a decision left to individual clinicians or institutional preference but rather a requirement, as a result of the 21st Century Cures Act Interoperability and Information Blocking Rule. The rule requires patients to be provided access to all health information in their electronic medical records, including progress notes (aka ‘‘open notes’’) (The Office of the National Coordinator for Health Information Technology, 2020). Cancer patients and their families face serious quality of life and information burdens that may be alleviated through access to notes (Blease et al., 2020). Earlier work has shown differences between clinician and patient attitudes after open notes implementation (Delbanco et al., 2010), but there has been no investigation into how oncology clinician views differ from those of their patients. We analyzed data from two web-based . . .

Preserving privacy for pediatric patients and families: use of confidential note types in pediatric ambulatory care

Parsons C, Hron J, Bourgeois F. Preserving privacy for pediatric patients and families: use of confidential note types in pediatric ambulatory care, Journal of the American Medical Informatics Association, ocaa202, https://doi.org/10.1093/jamia/ocaa202

Our data demonstrate variability in the use of a confidential note type across specialties, patient ages, and types of confidential information. This note type is frequently utilized by a subset of providers who often manage sensitive patient and parent information. As vendors and institutions enable open notes, thoughtful implementation and provider education surrounding the use of this confidential feature is needed.

Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA

Salmi L, Brudnicki S, Isono M, et al. BMJ Open. September 15, 2020. doi: 10.1136/bmjopen-2020-037016

In the absence of international standards, widely differing attitudes and laws, medical and social cultures strongly influence whether and how patients may access their medical records in various settings of care. Reviewing records, including the notes clinicians write, can help shape how people participate in their own care. Aided at times by new technologies, individual patients and care partners are repurposing existing tools and designing innovative, often ‘low-tech’ ways to collect, sort and interpret their own health information. To illustrate diverse approaches that individuals may take, six individuals from six nations offer anecdotes demonstrating how they are learning to collect, assess and benefit from their personal health information.

Open notes in cancer care: coming soon to patients

Blease C, Salmi L, DesRoches C. Open notes in cancer care: coming soon to patients, The Lancet Oncology. September 1, 2020.

From Nov 2, 2020, new federal laws in the USA mandate that providers must extend open notes to all patients, with a few permitted exemptions. Drawing on findings in oncology settings, this paper outlines what this innovation might mean for patients and oncologists.

Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?

Blease C, Delbanco T, Torous J, et al. Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?, Journal of Health Psychology. August 10, 2020.

This paper connects findings from the field of placebo studies with research into patients’ interactions with their clinician’s visit notes, housed in their electronic health records, and proposes specific hypotheses about how features of clinicians’ written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. The paper concludes with actionable proposals for testing the understanding of the health effects of access to visit notes.

Patients Evaluate Visit Notes Written by Their Clinicians: a Mixed Methods Investigation

Leveille S, Fitzgerald P, Harcourt K et al. Patients Evaluate Visit Notes Written by Their Clinicians: a Mixed Methods Investigation, Journal of General Internal Medicine. July 15, 2020. https://doi.org/10.1007/s11606-020-06014-7

Patients overwhelmingly report understanding their visit notes and usually find them accurate, with few disparities according to sociodemographic or health characteristics. They have many suggestions for improving their quality, and if they understand a note poorly or find inaccuracies, they often have less confidence in their clinicians.

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