How might AI, digital health technologies, and open notes transform diagnosis while addressing health disparities? Read highlights from the National Academies Forum on Advancing Diagnostic Excellence.
Bell, Sigall
Gaps in the coordination of care for people living with dementia
This study examines care coordination breakdowns reported by patients living with dementia (PLWD) or their care partners. Interventions to improve communication across different care teams are needed to minimize the harmful effects of gaps in care coordination.
Do patients who read visit notes on the patient portal have a higher rate of “loop closure” on diagnostic tests and referrals in primary care? A retrospective cohort study
Compared to no portal registration, the odds of loop closure were 20% higher in tests/referrals for patients with a portal account, and 40% higher in tests/referrals for note readers, after controlling for sociodemographic and clinical factors. However, important safety gaps from unclosed loops remain, requiring additional engagement strategies.
A patient-centered approach to writing ambulatory visit notes in the Cures Act era
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 identification of diagnostic safety blindspots and participation in “good catches” through shared visit notes
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.
Attitudes, experiences, and safety behaviours of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care
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.
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
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
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
Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations.
About half of patients and families who perceived a serious mistake in their notes reported it. Identified barriers demonstrate modifiable issues such as establishing clear mechanisms for reporting and more challenging issues such as creating a supportive culture. Respondents offered new ideas for engaging patients and families in improving note accuracy.
Patients Evaluate Visit Notes Written by Their Clinicians: a Mixed Methods Investigation
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.
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