Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool.

OBJECTIVE: Patients and families are key partners in diagnosis, but methods to routinely engage them in diagnostic safety are lacking. Policy mandating patient access to electronic health information presents new opportunities. We tested a new online tool ("OurDX") that was codesigned with patients and families, to determine the types and frequencies of potential safety issues identified by patients/families with chronic health conditions and whether their contributions were integrated into the visit note. METHODS: Patients/families at 2 US healthcare sites were invited to contribute, through an online previsit survey: (1) visit priorities, (2) recent medical history/symptoms, and (3) potential diagnostic concerns. Two physicians reviewed patient-reported diagnostic concerns to verify and categorize diagnostic safety opportunities (DSOs). We conducted a chart review to determine whether patient contributions were integrated into the note. We used descriptive statistics to report implementation outcomes, verification of DSOs, and chart review findings. RESULTS: Participants completed OurDX reports in 7075 of 18 129 (39%) eligible pediatric subspecialty visits (site 1), and 460 of 706 (65%) eligible adult primary care visits (site 2). Among patients reporting diagnostic concerns, 63% were verified as probable DSOs. In total, probable DSOs were identified by 7.5% of pediatric and adult patients/families with underlying health conditions, respectively. The most common types of DSOs were patients/families not feeling heard; problems/delays with tests or referrals; and problems/delays with explanation or next steps. In chart review, most clinician notes included all or some patient/family priorities and patient-reported histories. CONCLUSIONS: OurDX can help engage patients and families living with chronic health conditions in diagnosis. Participating patients/families identified DSOs and most of their OurDX contributions were included in the visit note.

Speaking up about patient-perceived serious visit note errors: Patient and family experiences and recommendations.

BACKGROUND: Open notes invite patients and families to read ambulatory visit notes through the patient portal. Little is known about the extent to which they identify and speak up about perceived errors. Understanding the barriers to speaking up can inform quality improvements. OBJECTIVE: To describe patient and family attitudes, experiences, and barriers related to speaking up about perceived serious note errors. METHODS: Mixed method analysis of a 2016 electronic survey of patients and families at 2 northeast US academic medical centers. Participants had active patient portal accounts and at least 1 note available in the preceding 12 months. RESULTS: 6913 adult patients (response rate 28%) and 3672 pediatric families (response rate 17%) completed the survey. In total, 8724/9392 (93%) agreed that reporting mistakes improves patient safety. Among 8648 participants who read a note, 1434 (17%) perceived ≥1 mistake. 627/1434 (44%) reported the mistake was serious and 342/627 (56%) contacted their provider. Participants who self-identified as Black or African American, Asian, "other," or "multiple" race(s) (OR 0.50; 95% CI (0.26,0.97)) or those who reported poorer health (OR 0.58; 95% CI (0.37,0.90)) were each less likely to speak up than white or healthier respondents, respectively. The most common barriers to speaking up were not knowing how to report a mistake (61%) and avoiding perception as a "troublemaker" (34%). Qualitative analysis of 476 free-text suggestions revealed practical recommendations and proposed innovations for partnering with patients and families. CONCLUSIONS: 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.

The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients.

Importance: The 21st Century Cures Act of 2016 requires that patients be given electronic access to all the information in their electronic medical records. The regulations for implementation of this law give patients far easier access to information about their care, including the notes their clinicians write. Objective: To assess clinicians' views and experiences with sharing clinical notes (open notes) with patients. Design, Setting, and Participants: Web-based survey study of physicians, advanced practice nurses, registered nurses, physician assistants, and therapists at 3 health systems in Boston, Massachusetts; Seattle, Washington; and rural Pennsylvania where notes have been shared across all outpatient specialties for at least 4 years. Participants were clinicians in hospital-based offices and community practices who had written at least 1 note opened by a patient in the year prior to the survey, which was administered from May 21, 2018, to August 31, 2018. Main Outcomes and Measures: Clinicians' experiences with and perceptions of sharing clinical notes with patients. Results: Invitations were sent to 6064 clinicians; 1628 (27%) responded. Respondents were more likely than nonrespondents to be female (65% vs 55%) and to be younger (mean [SD] age, 42.1 [12.6] vs 44.9 [12.7] years). The majority of respondents were physicians (951 [58%]), female (1023 [65%]), licensed to practice in 2000 or later (940 [61%]), and spent fewer than 40 hours per week in direct patient care (1083 [71%]). Most viewed open notes positively, agreeing they are a good idea (1182 participants [74%]); of 1314 clinicians who were aware that patients were reading their notes, 965 (74%) agreed that open notes were useful for engaging patients. In all, 798 clinicians (61%) would recommend the practice to colleagues. A total of 292 physicians (37%) reported spending more time on documentation, and many reported specific changes in the way they write their notes, the most frequent of which related to use of language that could be perceived as critical of the patient (422 respondents [58%]). Most physicians (1234 [78%]) favored being able to determine readily that their notes had been read by their patients. Conclusions and Relevance: In this survey of clinicians in a wide range of specialties who had several years of experience offering their patients ready access to their notes, more than two-thirds supported this new practice. Even among subgroups of clinicians who were less enthusiastic, most endorsed the idea of sharing notes and believed the practice could be helpful for engaging patients more actively in their care.