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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Effect of Notes’ Access and Complexity on OpenNotes’ Utility

Khasawneh A, Kratzke I, Adapa K, et al. Effect of Notes' Access and Complexity on OpenNotes' Utility. Appl Clin Inform. 2022; 13(5): 1015-1023.

Simplifying notes can improve understanding of notes for patients/families. However, perceived usability, cognitive workload, and satisfaction with even the simplified notes were still low. To make notes more useful for patients and their families, there is a need for dramatic improvements to the overall usability and content of the notes.

Internal Medicine Intern Preparedness to Document Clinical Encounters in the Era of Open Notes: a Needs Assessment Survey

Schiller P, Wong C, Golob A, et al. Internal Medicine Intern Preparedness to Document Clinical Encounters in the Era of Open Notes: a Needs Assessment Survey. Journal of General Internal Medicine. 2023; 38: 1556–1558.

[…] This study identifies a need to improve documentation education in the era of open notes. Additional research into the best ways to teach, write, and incorporate open notes into practice may empower trainees to use documentation to further improve patient care.

Catalyzing dementia care through the learning health system and consumer health information technology

Wolff J, DesRoches C, Amjad H, et al. Catalyzing dementia care through the learning health system and consumer health information technology. Alzheimer's Dement. 2023; 19: 2197–2207.

This perspective discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of ADRD care within the LHS. We aim to stimulate progress toward sustainable infrastructure paired with person- and family-facing innovations that catalyze broader transformation of ADRD care.

Open Notes Use in Psychiatry—The Need for Multilevel Efforts in Research and Practice

Matthews E, Zisman-Ilani Y. Open Notes Use in Psychiatry—The Need for Multilevel Efforts in Research and Practice. JAMA Psychiatry. 2023; 80(10): 977–978.

Support for open notes has been bolstered by evidence from a limited pool of early adopters showing that sharing mental health notes could improve indicators of patient-centered care, including patient-rated empowerment, mental health literacy, and therapeutic alliance.

The “Our Words Matter” Campaign to Reduce Stigma and Bias in Clinical Communication: A Case Report

Healy M. The “Our Words Matter” Campaign to Reduce Stigma and Bias in Clinical Communication: A Case Report. CommonHealth. 2023; 4(1): 1-10.

This case report describes the process of assembling a multidisciplinary team to create an educational campaign with the goal of reducing stigma and bias in the medical record. Campaigns like this one can serve as models for medical and public health professionals who seek to advance health equity.

21st Century Cures Act ONC Rule: Implications for Adolescent Care and Confidentiality Protections

Pasternak R, Alderman E, English A. | 21st Century Cures Act ONC Rule: Implications for Adolescent Care and Confidentiality Protections 2023; 151(Supplement 1)

This article reviews the key aspects of confidentiality protections in adolescent health care, explains the ONC Rule, outlines clinical, HIT, and equity challenges associated with its implementation, encourages the development of policies protecting the confidentiality of adolescents’ EHI [ … ] and offers tools for analyzing key questions in individual cases and practical steps to address the confidentiality of EHI with patients and parents.

People with diabetes who read their clinicians’ visit notes: Behaviors and attitudes

Dong Z, Leveille S, Lewis D, et al. People with diabetes who read their clinicians’ visit notes: Behaviors and attitudes. Chronic Illness. 2023; 0(0).

People with diabetes want to read their clinicians’ notes, are accessing them at high rates, and report understanding the notes and benefiting from reading them. Clinicians can encourage further engagement by enhancing the readability of notes and discussing the availability of notes with patients.

Clinical ethics consultation documentation in the era of open notes

Childers C, Marron J, Meyer E, et al. Clinical ethics consultation documentation in the era of open notes. BMC Med Ethics. 2023; 24: 27.

The new regulatory requirements of the 21st Century Cures Act provide a valuable opportunity to involve patients more actively in the documentation and telling of their own story of ethical complexity. Healthcare systems should take advantage of this new era and use open notes as a way to improve CECs documentation and, ultimately, patient care.

Access to records: Do open notes work for patients?

Silberner J. Access to records: Do open notes work for patients? BMJ. 2023; 381: 789.

Since 2021, Americans have been guaranteed full and immediate access to their own health records. Joanne Silberner asks if this has helped or hindered treatment.

Experiences with information blocking in the United States: a national survey of hospitals

Everson J, Healy D, Patel V. Experiences with information blocking in the United States: a national survey of hospitals. Journal of the American Medical Informatics Association. 2023; ocad060.

We sought to describe hospital leaders’ perceptions of the prevalence of practices that may constitute information blocking, by actor and hospital characteristics, following the rule’s applicability date. These results […] support the need for continued observation to provide a sense of the prevalence of information blocking practices and for education and awareness of information blocking regulations.

The Voice of the Patient and the Electronic Health Record

Payne T, Lehmann C, Zatzick A. The Voice of the Patient and the Electronic Health Record. Applied Clinical Informatics. 2023; 14(02): 254-257.

The patient’s voice […] and their preferences for care and its outcomes, is too small a part of the electronic health record (EHR). If you are a researcher or innovator, collaborate with patient groups and clinicians to create new ways to capture the patient voice, and to leverage it for good.

Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal

Steitz B, Turer R, Lin C, et al. Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal. JAMA Netw Open. 2023; 6(3): e233572.

In this multisite survey study of patient attitudes and preferences toward receiving immediately released test results via a patient portal, most respondents preferred to receive test results via the patient portal despite viewing results prior to discussion with a health care professional.

Patient Online Record Access in English Primary Care: Qualitative Survey Study of General Practitioners’ Views

Blease C, Torous J, Dong Z, et al. Patient Online Record Access in English Primary Care: Qualitative Survey Study of General Practitioners’ Views. J Med Internet Res. 2023; 25: e43496.

This study provides timely information on the views of GPs in England regarding patient access to their web-based health records. Overwhelmingly, GPs were skeptical about the benefits of access both for patients and to their practices.

Understanding the Cures Act Information Blocking Rule in cancer care: a mixed methods exploration of patient and clinician perspectives and recommendations for policy makers

Brooks J, Zegers C, Sinclair C, et al. Understanding the Cures Act Information Blocking Rule in cancer care: a mixed methods exploration of patient and clinician perspectives and recommendations for policy makers. BMC Health Serv Res 23, 216 (2023).

Patients with cancer and their cancer care teams want the ability to tailor information release based on individual preferences and goals. Understanding how to tailor implementation of the Information Blocking Rule is essential for retaining its benefits and minimizing unintended harm for patients with cancer.

A Patient-Centered Approach to Writing Ambulatory Visit Notes in the Cures Act Era

Lam B, Dupee D, Gerard M, et al. A Patient-Centered Approach to Writing Ambulatory Visit Notes in the Cures Act Era. Appl Clin Inform. 2023; 14(01): 199-204.

Most note-writing guides to date have focused on the experience of clinicians. Here, we build on these tips by integrating patient perspectives related to note-reading.

Patient Perspectives on Clinic Note Transparency Within Dermatology

Yang K, Lau CB, Lau WC, et al. Patient Perspectives on Clinic Note Transparency Within Dermatology. JAMA Dermatol. Published online March 08, 2023.

Research evaluating patient experiences with accessing their dermatology clinic notes is currently limited. In this survey study, we aimed to assess dermatology patient experiences with viewing online medical records and sought to identify areas for improvement.

Patient access to full general practice health records

Richards T, Coulter A, McMillan B, Hagglund M. Patient access to full general practice health records. BMJ. 2022; 379 :o3019.

Researchers in the UK say patients have little choice but to be more self-reliant due to overwhelming demands on the health system. Ready online access to full health records could help and may also reduce demand.

Patient Identification of Diagnostic Safety Blindspots and Participation in “Good Catches” Through Shared Visit Notes

Bell S, Bourgeios F, Dong J, et al. Patient Identification of Diagnostic Safety Blindspots and Participation in “Good Catches” Through Shared Visit Notes. Milbank Quarterly. 100: 1121-1165.

A new study from OpenNotes shows patients and families who read open notes hold unique insights and can catch potential safety hazards that are difficult for clinicians or organizations to see.

Deciding on My Dimples

Salmi, L. (2022). Deciding on my dimples. New England Journal of Medicine 2022;387(23), 2110–2111.

OpenNotes advocate/researcher Liz Salmi describes a high-stakes decision she made in collaboration with her neurosurgeon during awake craniotomy.

In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders

Smith C, Kelly M. In Anticipation of Sharing Pediatric Inpatient Notes: Focus Group Study With Stakeholders. J Particip Med 2022;14(1):e37759

Distinct themes identified as benefits of pediatric inpatient Open Notes for parents emerged from all the 5 focus groups. These themes were communication, recapitulation and reinforcement, education, stress reduction, quality control, and improving family-provider relationships. Challenges identified included burden on provider, medical jargon, communication, sensitive content, and decreasing trust.