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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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.

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.

Sharing Clinical Notes Potential Medical-Legal Benefits and Risks

Blease C, Cohen IG, Hoffman S. Sharing Clinical Notes: Potential Medical-Legal Benefits and Risks. JAMA. 2022;327(8):717–718. doi:10.1001/jama.2021.23179

It is possible that greater mutual understanding and strengthened patient-physician communication could promote better health outcomes and reduce patients’ inclination to litigate even when medical errors do arise. Verifying the potential effects of sharing clinical notes on malpractice liability risks will require thorough study and monitoring.

Negative Patient Descriptors: Documenting Racial Bias In The Electronic Health Record

Sun M, Oliwa T, Peek M, et al. Negative Patient Descriptors: Documenting Racial Bias In The Electronic Health Record. HealthAffairs, January 19, 2022. https://doi.org/10.1377/hlthaff.2021.01423

We found that Black patients at an urban academic medical center had disproportionately higher odds of negative patient descriptors appearing in the history and physical notes of their EHRs compared with White patients. This difference may indicate implicit racial bias not only among individual providers but also among the broader beliefs and attitudes maintained by the health care system. Such bias has the potential to stigmatize Black patients and possibly compromise their care, raising concerns about systemic racism in health care.

The US opened up access to health records—how do patients use them?

Silberner J. The US opened up access to health records—how do patients use them? BMJ. 2021;375:n2789

Since April, the US has required healthcare providers to allow patients full access to their medical records—a milestone in a decades-long effort by a group of researchers and patients. Joanne Silberner examines the impact so far, and whether concerns have been borne out

Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review

Schwarz J, Bärkås A, Blease C, et al. Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review. JMIR Ment Health. 2021;8(12):e34170

PAEHRs in MHC may strengthen user involvement, patients’ autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.

Attitudes, experiences, and safety behaviours of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care

Lam B, Bourgeois F, DesRoches C, et al. Attitudes, experiences, and safety behaviours of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care. Future Healthc J. November 2021. https://doi.org/10.7861/fhj.2021-0118

Today’s adolescents and young adults have grown up immersed in technology, but their interest in and benefit from reading their care notes online is not well understood. In our study, the majority of AYA read notes and rated them as extremely important for several engagement and safety behaviours. Although a similar proportion of AYA reported definite or possible errors in their notes as adults, fewer spoke up about them, citing knowledge and cultural barriers like fear of conflict. Taken together, these findings support initiatives that encourage AYA to read notes and share concerns. Efforts that include note-reading may help transition patients from paediatric to adult care with greater autonomy, activation and safety partnership.

Patients Contributing to Visit Notes: Mixed Methods Evaluation of OurNotes

Walker J, Leveille S, Kriegel G, et al. Patients Contributing to Visit Notes: Mixed Methods Evaluation of OurNotes. J Med Internet Res 2021;23(11):e29951 doi: 10.2196/29951

OurNotes interests patients, and providers experience it as a positive intervention. Participation by patients, care partners, clinicians, and electronic health record experts will facilitate further development.

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.

Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care

Bell S, Bourgeois F, DesRoches C, et al. Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care. BMJ Quality & Safety. Published Online First: 16 October 2021. doi: 10.1136/bmjqs-2021-013672

The PRDB framework, developed in partnership with patients/families, can help organisations identify and reliably categorise PRDBs, including some that are invisible to clinicians; guide interventions to engage patients and families as diagnostic partners; and inform whole organisational learning.

Co-development of OurDX—an online tool to facilitate patient and family engagement in the diagnostic process

Bell S, Bourgeois F, Liu S, et al. Co-development of OurDX—an online tool to facilitate patient and family engagement in the diagnostic process, BMJ Opinion, Oct. 14, 2021.

Patients and their care partners are usually the first to notice new or changing symptoms and are the connecting “thread” between different healthcare encounters. In this article Sigall Bell, Fabienne Bourgeois, Stephen Liu, and Eric Thomas—along with patient partners Betsy Lowe and Liz Salmi—describe the co-development of an online tool called “OurDX” (Our Diagnosis) to engage patients and families in the diagnostic process

We need to talk about “closed notes”

Blease C. We need to talk about “closed notes,” BMJ Opinion, Oct. 15, 2021.

In this personal blog, the author discusses the harmful consequence of “closed notes” – of denying patients rapid access to their online clinical information. The blog post describes “closed notes” as an inherited structure in healthcare but urges that this does not make it right.

Patient Perceptions of Receiving COVID-19 Test Results via an Online Patient Portal: An Open Results Survey

Turer R, DesRoches C, Salmi L, et al. Patient Perceptions of Receiving COVID-19 Test Results via an Online Patient Portal: An Open Results Survey. Appl Clin Inform 2021; 12(04): 954-959. doi: 10.1055/s-0041-1736221

This study evaluated patient perspectives related to receiving COVID-19 test results via an online patient portal prior to discussion with a clinician. Users found the portal easy to use but expressed mixed preferences about the means of notification of result availability (e.g., email, text, or phone call). Users found immediate access to results useful for managing their health, employment, and family/childcare. Many users shared their results and encouraged others to get tested. Our cohort consisted mostly of non-Hispanic white, highly educated, English-speaking patients. Overall, patients found open results useful for COVID-19 testing and few expressed increased worries from receiving their results via the patient portal.

The benefits and harms of open notes in mental health: A Delphi survey of international experts

Blease C, Kharko A, Hägglund M, et al. The benefits and harms of open notes in mental health: A Delphi survey of international experts. PLoS ONE 16(10): e0258056. https://doi.org/10.1371/journal.pone.0258056

This survey used a Delphi poll – an established methodology used to investigate emerging healthcare policy, including in psychiatry. International experts who included health professionals and persons with lived experience of mental healthcare were asked to give their opinions, anonymously, in three rounds of online surveys, and to offer their views about the potential benefits and harms of online access to mental health notes. Experts – drawn from 70 experts from six countries – agreed patients’ access to their mental health notes could offer multiple benefits and few harms.

Risks and rewards of increasing patient access to medical records in clinical ophthalmology using OpenNotes

Radell J, Tatum J, Lin, CT. et al. Risks and rewards of increasing patient access to medical records in clinical ophthalmology using OpenNotes. Eye (2021). https://doi.org/10.1038/s41433-021-01775-9

Clinicians in ophthalmology perceived both benefits and consequences of increasing patient access to ophthalmic records, and there were significant correlations between these perceptions and their conceptions of the clinician–patient relationship. This is the first study to assess potential ophthalmology provider attitudes toward sharing ophthalmic records. Although limited in sample size and power, this study demonstrates some ways patient-accessible ophthalmic records can affect the clinical practice of ophthalmology and emphasizes the unique challenges of OpenNotes in ophthalmology.

A step-by-step guide to peer review: a template for patients and novice reviewers

Salmi L, Blease C. A step-by-step guide to peer review: a template for patients and novice reviewers. BMJ Health & Care Informatics 2021;28:e100392. doi: 10.1136/bmjhci-2021-100392

The peer review template for patients and novice reviewers is a series of steps designed to create a workflow for the main components of peer review. While relatively novel, patient peer review has the potential to change the healthcare publishing paradigm. It can do this by helping researchers enlarge the pool of people who are welcome to read, understand and participate in healthcare research. Academic journals who are early adopters of patient peer review have already committed to placing a priority on using person-centred language in publicly available abstracts and focusing on translational and practical research.