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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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). doi:https://doi.org/10.1542/peds.2022-057267k ‌

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). doi:10.1177/17423953231171890

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. https://doi.org/10.1186/s12910-023-00904-1

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. doi: https://doi.org/10.1136/bmj.p789

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. https://doi.org/10.1093/jamia/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. doi: 10.1055/s-0043-1767685

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. doi:10.1001/jamanetworkopen.2023.3572

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. doi: 10.2196/43496

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). https://doi.org/10.1186/s12913-023-09230-z

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. doi: 10.1055/s-0043-1761436

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. doi:10.1001/jamadermatol.2023.0086

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. doi:10.1136/bmj.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. https://doi.org/10.1111/1468-0009.12593

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. doi: 10.1056/nejmp2210418

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 doi: 10.2196/37759

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.

Assessing the impact of patient access to clinical notes on clinician EHR documentation

Holmgren J, Apathy N. Assessing the impact of patient access to clinical notes on clinician EHR documentation, Journal of the American Medical Informatics Association, 2022, ocac120, https://doi.org/10.1093/jamia/ocac120

Using a national, longitudinal data set consisting of all ambulatory care physicians and advance practice providers using an Epic Systems EHR, we used an interrupted time-series analysis to evaluate the immediate impact of the policy change on clinician note length and time spent documenting in the EHR. We found no evidence of a change in note length or time spent writing notes following the implementation of the policy, suggesting patient access to clinical notes did not increase documentation workload for clinicians.

Open notes in patient care: confining deceptive placebos to the past?

Blease C, DesRoches C. Open notes in patient care: confining deceptive placebos to the past? Journal of Medical Ethics. 2022; 48: 572-574. doi:10.1136/medethics-2021-107746

In some countries, the practice of “open notes” is advanced with patients using online portals to access their clinical records. In this report, the authors reflect on the consequences of access for placebo prescribing, particularly for the common practice of deceptive placebo use, in which patients are not aware they are being offered a placebo.

Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity

Wolff J, Dukhanin V, Burgdorf J, et al. Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity. JMIR Aging 2022;5(2):e34628 doi: 10.2196/34628

This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.

Patient characteristics and utilization of an online patient portal in a rural academic general internal medicine practice

Liu S, Osborn A, Bell S, et al. Patient characteristics and utilization of an online patient portal in a rural academic general internal medicine practice. BMC Med Inform Decis Mak 22, 42 (2022). https://doi.org/10.1186/s12911-022-01778-w

In a rural academic internal medicine clinic, female patients, aged 41–65, non-smokers, and those without certain chronic conditions were more likely to use an online patient portal. Recognizing and addressing barriers to patient portal use is essential for robust and sustained patient portal uptake and ensuring that the benefits of portal use are equally distributed among all patients.

Lessons Learned from OpenNotes Learning Mode and Subsequent Implementation across a Pediatric Health System

Murugan A, Gooding H, Greenbaum J, et al. Lessons Learned from OpenNotes Learning Mode and Subsequent Implementation across a Pediatric Health System. Appl Clin Inform. 2022 Jan;13(1):113-122. doi: 10.1055/s-0041-1741483. Epub 2022 Jan 26. PMID: 35081655; PMCID: PMC8791761.

The 21st Century Cures Act has accelerated adoption of OpenNotes, providing new opportunities for patient and family engagement in their care. However, these regulations present new challenges, particularly for pediatric health systems aiming to improve information sharing while minimizing risks associated with adolescent confidentiality and safety.