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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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. DOI: 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.

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

Blease C, DesRoches C. J Med Ethics Epub ahead of print: 26 October 2021. doi:10.1136/ medethics-2021-107746

Increasing numbers of health organisations are offering some or all of their patients access to the visit notes housed in their electronic health records (so-called ’open notes’). In some countries, including Sweden and the USA, this innovation is advanced with patients using online portals to access their clinical records including the visit summaries written by clinicians. In many countries, patients can legally request copies of their records; however, open notes are different because this innovation offers patients rapid, real-time access via electronic devices. In this brief report, we explore what open notes might mean for placebo use in clinical care.

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.

“Let’s Talk About Your Note”: Using Open Notes as an Acceptance and Commitment Therapy Based Intervention in Mental Health Care

Smith C, Stavig A, McCann P, et al. “Let's Talk About Your Note”: Using Open Notes as an Acceptance and Commitment Therapy Based Intervention in Mental Health Care, Frontiers in Psychiatry. v12, 2021,10.3389/fpsyt.2021.704415

Open notes are now the norm in mental health care in the U.S. Despite clinician concerns, early experiences suggest that patients and clinicians stand to benefit from embracing this change. Future studies should investigate using open notes as a clinical intervention while incorporating core processes of experiential therapies. ACT provides a framework for using open notes as a clinical tool in mental health care.

Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study

Janssen SL, Venema-Taat N, Medlock S. Anticipated Benefits and Concerns of Sharing Hospital Outpatient Visit Notes With Patients (Open Notes) in Dutch Hospitals: Mixed Methods Study J Med Internet Res 2021;23(8):e27764

Dutch patients are interested in shared visit notes, but physicians have many concerns that should be addressed if shared notes are pursued. Physicians’ concerns should be addressed before shared notes are implemented. In hospitals where shared notes are implemented, the effects should be monitored (objectively, if possible) to determine whether the concerns raised by our participants have actualized into problems and whether the anticipated benefits are being realized.

OpenNotes: Anticipatory Guidance and Ethical Considerations for Pediatric Psychologists in Interprofessional Settings

Fogler J, Ratliff-Schaub K, McGuinn L, et al. OpenNotes: Anticipatory Guidance and Ethical Considerations for Pediatric Psychologists in Interprofessional Settings, Journal of Pediatric Psychology, 2021;, jsab091, https://doi.org/10.1093/jpepsy/jsab091

The OpenNotes era has ushered in the possibilities of greater patient and family collaboration in shared decision-making and reduced barriers to documentation sharing. However, it has raised new ethical and clinician documentation considerations. In addition to clinician education, patients and families could benefit from education around the purpose of clinical documentation, how to utilize OpenNotes, and the benefits of engaging in dialogue regarding the content and tone of documentation.

How do older patients with chronic conditions view reading open visit notes?

DesRoches C, Salmi L, Dong Z, et al. How do older patients with chronic conditions view reading open visit notes? J Am Geriatr Soc. 2021; 1- 10. https://doi.org/10.1111/jgs.17406

Authors examined the experiences with and perceptions of the effect of reading clinical outpatient visit notes on older adult patients with multiple chronic conditions at three healthcare organizations with significant experience sharing clinical notes with patients. The majority of respondents had read two or more clinical notes in the 12 months before the survey. Patients with more than two chronic conditions were more likely than those with fewer or none to report that reading their notes helped them remember their care plan, take their medications as prescribed, and understand and feel more in control of their medications. Very few patients reported feeling worried or confused about their health or medications due to reading their notes.

Open notes sounds great, but will a provider’s documentation change? An exploratory study of the effect of open notes on oncology documentation

Rahimian M, Warner J, Salmi L, et al. Open notes sounds great, but will a provider’s documentation change? An exploratory study of the effect of open notes on oncology documentation, JAMIA Open, Volume 4, Issue 3, July 2021, ooab051, https://doi.org/10.1093/jamiaopen/ooab051

This study evaluated whether implementing open notes at a large academic medical center was associated with changes in measures of the length and readability of progress notes written by hematology/oncology clinicians. After the implementation of open notes, progress notes and A&P sections became both longer and easier to read. This suggests clinician documenters may be responding to the perceived pressures of a transparent medical records environment.

A natural language processing pipeline to synthesize patient-generated notes toward improving remote care and chronic disease management: a cystic fibrosis case study

Hussain S, Sezgin E, Krivchenia K, et al. A natural language processing pipeline to synthesize patient-generated notes toward improving remote care and chronic disease management: a cystic fibrosis case study, JAMIA Open, Volume 4, Issue 3, July 2021, ooab084, https://doi.org/10.1093/jamiaopen/ooab084

Our study demonstrated that an NLP pipeline can be used to create an automated analysis and reporting mechanism for unstructured PGHD. Further studies are suggested with real-world data to assess pipeline performance and further implications.

Physician Use of Stigmatizing Language in Patient Medical Records

Park J, Saha S, Chee B, et al. Physician Use of Stigmatizing Language in Patient Medical Records. JAMA Netw Open. 2021;4(7):e2117052. doi:10.1001/jamanetworkopen.2021.17052

This qualitative study found that physicians express negative and positive attitudes toward patients when documenting in the medical record. Although often not explicit, this language could potentially transmit bias and affect the quality of care that patients subsequently receive. These findings suggest that increased physician awareness when writing and reading medical records is needed to prevent the perpetuation of negative bias in medical care.

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

Blease C, Salmi L, Rexhepi H, et al. Patients, clinicians and open notes: information blocking as a case of epistemic injustice. J Med Ethics. 2021 May 14:medethics-2021-107275. doi: 10.1136/medethics-2021-107275. Epub ahead of print. PMID: 33990427

We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

Knowledge, power, and patients: The ethics of open notes

Blease C, DesRoches C, Hägglund M, et al. Knowledge, power, and patients: The ethics of open notes. Journal of Medical Ethics Blog (2021).

But do patients really need access to their health information, or should electronic health records be the sole preserve of physicians? We explore this question using our own case studies.