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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.

Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes

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

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.

Covid-19 as Innovation Accelerator: Cogenerating Telemedicine Visit Notes with Patients

Kriegel G, Bell S, Delbanco T, Walker J. Covid-19 as Innovation Accelerator: Cogenerating Telemedicine Visit Notes with Patients, NEJM Catalyst, May 12, 2020. DOI: 10.1056/CAT.20.0154

Over the past decade, Beth Israel Deaconess Medical Center has been committed to sharing clinical notes with its patients. Now, as the Covid-19 pandemic is accelerating the adoption of telemedicine, the hospital’s primary care practice is implementing an initiative called OurNotes. In addition to inviting patients to review notes before and after a visit, this effort also engages patients before the telemedicine visit by soliciting important prework information through an electronic form, and by enabling coproduction of the visit note.

Care Partners and Patient Portals—Faulty Access, Threats to Privacy, and Ample Opportunity

DesRoches C, Walker J, Delbanco T. Care Partners and Patient Portals—Faulty Access, Threats to Privacy, and Ample Opportunity, JAMA Intern Med. Published online May 4, 2020. doi:10.1001/jamainternmed.2020.0514

Care partners value having access to their loved one’s information. The patient portal is a convenient way to access test results and clinical notes, communicate with health care practitioners, and link care partners to the clinical team, making it a powerful tool for realizing the goals of care.

Sharing Psychotherapy Notes with Patients: Therapists’ Attitudes and Experiences

Chimowitz H, O’Neill S, Leveille S, et. al. Social Work, Volume 65, Issue 2, April 2020, Pages 159–168, https://doi.org/10.1093/sw/swaa010

Evidence suggests that the practice of sharing clinicians’ notes with patients via online patient portals may increase patient engagement and improve patient–clinician relationships while requiring little change in providers’ workflow. Authors examined clinical social workers’ experiences and attitudes related to open psychotherapy notes using focus groups and telephone interviews.

The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients

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

In this web-based survey study of 1628 clinicians, most viewed note sharing positively (74% agreed that it is a good idea and 74% viewed shared notes as useful for engaging patients in their care), and 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.

Empowering patients and reducing inequities: is there potential in sharing clinical notes?

Blease C, Fernandez L, Bell S, et al., Empowering patients and reducing inequities: is there potential in sharing clinical notes? BMJ Quality & Safety, http://dx.doi.org/10.1136/bmjqs-2019-010490

Patients who read their clinical notes via online patient portals (‘open notes’) report that doing so engages them actively in their care, improves their sense of control over their health and enhances safety. In several surveys, patients who are older, less educated, non-white or whose first language is not English report even greater benefits than do their counterparts. However, for many reasons, persons from these demographic groups are less likely to use health portals than other patient populations.

Dermatopathologists’ Experience With and Perceptions of Patient Online Access to Pathologic Test Result Reports

Shucard H, Piepkorn M, Reisch L, et al., Dermatopathologists’ Experience With and Perceptions of Patient Online Access to Pathologic Test Result Reports, JAMA Dermatol. 2020;156(3):320-324. doi:10.1001/jamadermatol.2019.4194

In this survey study of 160 dermatopathologists, 57% reported that they have been contacted by patients about their pathologic test result reports.

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