Patient Identification of Diagnostic Safety Blindspots and Participation in "Good Catches" Through Shared Visit Notes.

Policy Points Patients and families can identify clinically relevant errors, including "blindspots"-safety hazards that are difficult for clinicians or organizations to see. Health information transparency, including patient access to electronic visit notes, now federally mandated in the US and the subject of policy debate worldwide, creates a new opportunity to engage patients in diagnostic safety. However, not all patients access notes. Patient identification of blindspots in their notes underscores the need to systematically and equitably engage willing patients in safety, promote patient "good catches," and establish routine systems for patient feedback to help avoid preventable diagnostic errors and delays. CONTEXT: Policy shifts toward health information transparency provide a new opportunity for patients to contribute to diagnostic safety. We investigated whether sharing clinical notes with patients can support identification of "diagnostic safety blindspots"-potentially consequential breakdowns in the diagnostic process that may be difficult for clinical staff to observe. METHOD: We used mixed methods to analyze patient-reported ambulatory documentation errors among 22,889 patients at three US health care centers who read ≥ 1 visit note(s). We identified blindspots by tailoring a previously established taxonomy. We used multiple regression analysis to identify factors associated with blindspot identification. FINDINGS: 774 patients reported a total of 962 blindspots in 4 categories: (1) diagnostic misalignments (n = 421, 43.8%), including inaccurate symptoms or histories and failures or delay in diagnosis; (2) errors of omission (38.1%) including missed main concerns or next steps, and failure to listen to patients; (3) problems occurring outside visits (14.3%) such as tests, referrals, or appointment access; and (4) multiple low-level problems (3.7%) cascading into diagnostic breakdowns. Many patients acted on the blindspots they identified, resulting in "good catches" that may prevent potential negative consequences. Older, female, sicker, unemployed or disabled patients, or those who work in health care were more likely to identify a blindspot. Individuals reporting less formal education; those self-identifying as Black, Asian, other, or multiple races; and participants who deferred decision-making to providers were less likely to report a blindspot. CONCLUSION: Patients who read notes have unique insight about potential errors in their medical records that could impact diagnostic reasoning but may not be known to clinicians-underscoring a critical role for patients in diagnostic safety and organizational learning. From a policy standpoint, organizations should encourage patient review of visit notes, build systems to track patient-reported blindspots, and promote equity in note access and blindspot reporting.

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

BACKGROUND: Online patient portals have the potential to improve patient engagement and health care outcomes. This is especially true among rural patient populations that may live far from their health care providers and for whom transportation is a barrier to accessing care. This study compared the characteristics of active users of an online patient portal to non-users and assessed utilization among users in a rural academic primary care clinic to identify disparities in adoption and use. METHODS: We conducted a cross sectional study of 28,028 patients in a general internal medicine clinic between June 2019 and May 2020 to assess (a) characteristics of patients who had an online patient portal account and used the patient portal compared to those who did not register for an account, and (b) the frequency of use of the patient portal (number of logons and number of messages sent and received) by patients over the study period. We compared results based on demographic characteristics, focusing on gender, age, race, presence or absence of nine chronic illnesses, smoking status, and BMI. RESULTS: In the study cohort of 28,028 patients, 82% were active users of the patient portal. Females, patients aged 41-65, and non-smokers were more likely to use the portal than their counterparts. In total, patients with eight out of nine chronic illness groups studied (heart failure, cerebrovascular disease, history of a myocardial infarction, peripheral vascular disease, and renal disease) were less likely to use the patient portal than patients without these chronic conditions. On average, patients log onto the patient portal 25 times per year and send and receive 6 messages to and from the clinic. We found that females, patients older than 65, former smokers and obese patients logged on and sent and received more messages compared to the overall cohort. Although the sample size was small, on average Black patients logged onto the patient portal 19 times and sent and received 3.6 messages compared to White patients who logged on 25 times with 5.8 messages on average over the yearlong study period. CONCLUSIONS: 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.

Radiology Trainees' Perceptions of Speaking up Culture Related to Safety and Unprofessional Behavior in Their Work Environments.

OBJECTIVE. The purpose of this study was to compare radiology trainees' perceptions of the culture regarding speaking up about patient safety and unprofessional behavior in the clinical environment and to assess the likelihood that they will speak up in the presence of a medical hierarchy. MATERIALS AND METHODS. The study included radiology trainees from nine hospitals who attended a communication workshop. Trainees completed questionnaires assessing their perceptions of the support provided by their clinical environment regarding speaking up about patient safety and unprofessional behavior. We also queried their likelihood of speaking up within a team hierarchy about an error presented in a hypothetical clinical vignette. RESULTS. Of 61 participants, 58 (95%) completed questionnaires. Of these 58 participants, 84% felt encouraged by colleagues to speak up about safety concerns, and 57% felt encouraged to speak up about unprofessional behavior (p < .001). Moreover, 17% and 34% thought speaking up about safety concerns and unprofessional behavior, respectively, was difficult (p < .02). Trainees were less likely to agree that speaking up about unprofessional behavior (compared with speaking up about safety concerns) resulted in meaningful change (66% vs 95%; p < .001). In a vignette describing a sterile technique error, respondents were less likely to speak up to an attending radiologist (48%) versus a nurse, intern, or resident (79%, 84%, and 81%, respectively; p < .001). Significant predictors of the likelihood of trainees speaking up to an attending radiologist included perceived potential for patient harm as a result of the error (odds ratio [OR], 6.7; p < .001), perceptions of safety culture in the clinical environment (OR, 5.0; p = .03), and race or ethnicity (OR, 3.1; p = .03). CONCLUSION. Radiology trainees indicate gaps in workplace cultures regarding speaking up, particularly concerning unprofessional behavior and team hierarchy.

Patients Evaluate Visit Notes Written by Their Clinicians: a Mixed Methods Investigation.

BACKGROUND: Patients actively involved in their care demonstrate better health outcomes. Using secure internet portals, clinicians are increasingly offering patients access to their narrative visit notes (open notes), but we know little about their understanding of notes written by clinicians. OBJECTIVE: We examined patients' views on the clarity, accuracy, and thoroughness of notes, their suggestions for improvement, and associations between their perceptions and willingness to recommend clinicians to others. DESIGN: We conducted an online survey of patients in 3 large health systems, June-October 2017. We performed a mixed methods analysis of survey responses regarding a self-selected note. PARTICIPANTS: Respondents were 21,664 patients aged 18 years or older who had read at least 1 open note in the previous 12 months. MAIN MEASURES: We asked to what degree the patient recalled understanding the note, whether it described the visit accurately, whether anything important was missing, for suggestions to improve the note, and whether they would recommend the authoring clinician to others. KEY RESULTS: Nearly all patients (96%) reported they understood all or nearly all of the self-selected note, with few differences by clinician type or specialty. Overall, 93% agreed or somewhat agreed the note accurately described the visit, and 6% reported something important missing from the note. The most common suggestions for improvement related to structure and content, jargon, and accuracy. Patients who reported understanding only some or very little of the note, or found inaccuracies or omissions, were much less likely to recommend the clinician to family and friends. CONCLUSIONS: 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.

Correction: OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes.

[This corrects the article DOI: 10.2196/13876.].

Development of a framework to describe patient and family harm from disrespect and promote improvements in quality and safety: a scoping review.

PURPOSE: Patients and families may experience 'non-physical' harm from interactions with the healthcare system, including emotional, psychological, socio-behavioral or financial harm, some of which may be related to experiences of disrespect. We sought to use the current literature to develop a practical, improvement-oriented framework to recognize, describe and help prevent such events. DATA SOURCES: Searches were performed in PubMed, Embase, PsychINFO, CINAHL, Health Business Elite and ProQuest Dissertations & Theses: Global: Health & Medicine, from their inception through July 2017. STUDY SELECTION: Two authors reviewed titles, abstracts, full texts, references and cited-by lists to identify articles describing approaches to understanding patient/family experiences of disrespect. DATA EXTRACTION: Findings were evaluated using integrative review methodology. RESULTS OF DATA SYNTHESIS: Three-thousand eight hundred and eighty two abstracts were reviewed. Twenty three articles were identified. Components of experiences of disrespect included: (1) numerous care processes; (2) a wide range of healthcare professional and organizational behaviors; (3) contributing factors, including patient- and professional-related factors, the environment of work and care, leadership, policies, processes and culture; (4) important consequences of disrespect, including behavioral changes and health impacts on patients and families, negative effects on professionals' subsequent interactions, and patient attrition from organizations and (5) factors both intrinsic and extrinsic to patients that can modify the consequences of disrespect. CONCLUSION: A generalizable framework for understanding disrespect experienced by patients/families in healthcare may help organizations better prevent non-physical harms. Future work should prospectively test and refine the framework we described so as to facilitate its integration into organizations' existing operational systems.

OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes.

BACKGROUND: Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices. OBJECTIVE: The aim of this study was to examine the ongoing experiences and perceptions of patients who read ambulatory visit notes written by a broad range of doctors, nurses, and other clinicians. METHODS: A total of 3 large US health systems in Boston, Seattle, and rural Pennsylvania conducted a Web-based survey of adult patients who used portal accounts and had at least 1 visit note available in a recent 12-month period. The main outcome measures included patient-reported behaviors and their perceptions concerning benefits versus risks. RESULTS: Among 136,815 patients who received invitations, 21.68% (29,656/136,815) responded. Of the 28,782 patient respondents, 62.82% (18,081/28,782) were female, 72.90% (20,982/28,782) were aged 45 years or older, 76.94% (22,146/28,782) were white, and 14.30% (4115/28,782) reported fair or poor health. Among the 22,947 who reported reading 1 or more notes, 3 out of 4 reported reading them for 1 year or longer, half reported reading at least 4 notes, and 37.74% (8588/22,753) shared a note with someone else. Patients rated note reading as very important for helping take care of their health (16,354/22,520, 72.62%), feeling in control of their care (15,726/22,515, 69.85%), and remembering the plan of care (14,821/22,516, 65.82%). Few were very confused (737/22,304, 3.3%) or more worried (1078/22,303, 4.83%) after reading notes. About a third reported being encouraged by their clinicians to read notes and a third told their clinicians they had read them. Less educated, nonwhite, older, and Hispanic patients, and individuals who usually did not speak English at home, were those most likely to report major benefits from note reading. Nearly all respondents (22,593/22,947, 98.46%) thought Web-based access to visit notes a good idea, and 62.38% (13,427/21,525) rated this practice as very important for choosing a future provider. CONCLUSIONS: In this first large-scale survey of patient experiences with a broad range of clinicians working in practices in which shared notes are well established, patients find note reading very important for their health management and share their notes frequently with others. Patients are rarely troubled by what they read, and those traditionally underserved in the United States report particular benefit. However, fewer than half of clinicians and patients actively address their shared notes during visits. As the practice continues to spread rapidly in the United States and internationally, our findings indicate that OpenNotes brings benefits to patients that largely outweigh the risks.

Empowering Informal Caregivers with Health Information: OpenNotes as a Safety Strategy.

BACKGROUND: Enabling family/friend caregivers with access to visit notes may help avoid errors, delayed diagnoses, or other ambulatory safety risks. Patient, parent, and caregiver perceptions of how shared notes affect safety behaviors and attitudes were studied in an exploratory study. METHODS: To assess the impact of OpenNotes on safety, 24,722 patients with active portal accounts and ≥ 1 available visit notes during the prior year at an urban hospital were surveyed between June and September 2016. Surveys were sent to patient portal accounts, and respondents designated themselves as patients or caregivers. Although the hospital does not have formal proxy portal registration, some patients share access with their caregivers. RESULTS: Of 24,722 portal accounts accessed during the study, 7,058 (28.5%) surveys were returned, with 150 (2.1%) participants identified as caregivers. Among patients who had tests and referrals, reading notes helped caregivers understand the reason for the test (96/120 [80.0%]) or referral (48/52 [92.3%]), remember to get patient tests done (66/120 [55.0%]), check (98/120 [81.7%]) and understand (98/120 [81.7%]) results, and remember patient appointments (36/52 [69.2%]). As a result of reading notes, 54.1% (59/109) of caregivers helping patients on prescription medications reported better assisting patients to take them correctly. Among note-reading caregivers, 53.7% (n = 72/134) trusted the clinician more (44.8% no change), and 58.2% (n = 78/134) reported better teamwork (41.0% no change) as a result of open notes. In total, 30.3% (n = 40/132) reported at least one mistake or possible mistake in the patient's notes. Finding a possible mistake did not negatively affect trust or teamwork. CONCLUSION: OpenNotes may enable caregivers with patient health information, answering the call to better support this critical group in the health care system and to engage patients and families in safety efforts.

A Multi-Stakeholder Consensus-Driven Research Agenda for Better Understanding and Supporting the Emotional Impact of Harmful Events on Patients and Families.

BACKGROUND: The nature and consequences of patient and family emotional harm stemming from preventable medical error, such as losing a loved one or surviving serious medical injury, is poorly understood. Patients and families, clinicians, social scientists, lawyers, and foundation/policy leaders were brought together to establish research priorities for this issue. METHODS: A one-day conference of diverse stakeholder groups to establish a consensus-driven research agenda focused on (1) priorities for research on the short-term and long-term emotional impact of harmful events on patients and families, (2) barriers and enablers to conducting such research, and (3) actionable steps toward better supporting harmed patients and families now. RESULTS: Stakeholders discussed patient and family experiences after serious harmful events, including profound isolation, psychological distress, damaging aspects of medical culture, health care aversion, and negative effects on communities. Stakeholder groups reached consensus, defining four research priorities: (1) Establish conceptual framework and patient-centered taxonomy of harm and healing; (2) Describe epidemiology of emotional harm; (3) Determine how to make emotional harm and long-term impacts visible to health care organizations and society at large; and (4) Develop and implement best practices for emotional support of patients and families. The group also created a strategy for overcoming research barriers and actionable "Do Now" approaches to improve the patient and family experience while research is ongoing. CONCLUSION: Emotional and other long-term impacts of harmful events can have profound consequences for patients and families. Stakeholders designed a path forward to inform approaches that better support harmed patients and families, with both immediately actionable and longer-term research strategies.

The Importance of Visit Notes on Patient Portals for Engaging Less Educated or Nonwhite Patients: Survey Study.

BACKGROUND: OpenNotes, a national initiative to share clinicians' visit notes with patients, can improve patient engagement, but effects on vulnerable populations are not known very well. OBJECTIVE: Our aim is to examine the importance of visit notes to nonwhite and less educated patients. METHODS: Patients at an urban academic medical center with an active patient portal account and ≥1 available ambulatory visit note over the prior year were surveyed during June 2016 until September 2016. The survey was designed with patients and families and assessed importance of reading notes (scale 0-10) for (1) understanding health conditions, (2) feeling informed about care, (3) understanding the provider's thought process, (4) remembering the plan of care, and (5) making decisions about care. We compared the proportion of patients reporting 9-10 (extremely important) for each item stratified by education level, race/ethnicity, and self-reported health. Principal component analysis and correlation measures supported a summary score for the 5 items (Cronbach alpha=.93). We examined factors associated with rating notes as extremely important to engage in care using logistic regression. RESULTS: Of 24,722 patients, 6913 (27.96%) completed the survey. The majority (6736/6913, 97.44%) read at least one note. Among note readers, 74.0% (727/982) of patients with ≤high school education, 70.7% (130/184) of black patients, and 69.9% (153/219) of Hispanic/Latino patients reported that notes are extremely important to feel informed about their care. The majority of less educated and nonwhite patients reported notes as extremely important to remember the care plan (62.4%, 613/982 ≤high school education; 62.0%, 114/184 black patients; and 61.6%, 135/219 Hispanic/Latino patients) and to make care decisions (62.3%, 612/982; 59.8%, 110/184; and 58.5%, 128/219, respectively, and P<.003 for all comparisons to more educated and white patients, respectively). Among patients with the poorest self-reported health, 65.9% (499/757) found notes extremely important to be informed and to understand the provider. On multivariable modeling, less educated patients were nearly three times as likely to report notes were extremely important to engage in care compared with the most educated patients (odds ratio [OR] 2.9, 95% CI 2.4-3.3). Nonwhite patients were twice as likely to report the same compared with white patients (OR 2.0, 95% CI 1.5-2.7 [black] and OR 2.2, 95% CI 1.6-2.9 [Hispanic/Latino and Asian], P<.001 for each comparison). Healthier patients, women, older patients, and those who read more notes were more likely to find notes extremely important to engage in care. CONCLUSIONS: Less educated and nonwhite patients using the portal each assigned higher importance to reading notes for several health behaviors than highly educated and white patients, and may find transparent notes especially valuable for understanding their health and engaging in their care. Facilitating access to notes may improve engagement in health care for some vulnerable populations who have historically been more challenging to reach.

What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information.

BACKGROUND: Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking. OBJECTIVE: We aimed to learn more about patient experiences with reading and providing feedback on their visit notes. METHODS: We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74). RESULTS: Patients and care partners submitted 260 reports. Among these, 98.5% (256/260) of reports indicated that the reporting tool was valuable, and 68.8% (179/260) highlighted what patients liked about reading notes and the OpenNotes patient reporting tool process. We identified 4 themes describing what patients value about note content: confirm and remember next steps, quicker access and results, positive emotions, and sharing information with care partners; and 4 themes about both patients' use of notes and the feedback tool: accuracy and correcting mistakes, partnership and engagement, bidirectional communication and enhanced education, and importance of feedback. CONCLUSIONS: Patients and care partners who read notes and submitted feedback reported greater engagement and the desire to help clinicians improve note accuracy. Aspects of what patients like about using both notes as well as a feedback tool highlight personal, relational, and safety benefits. Future efforts to engage patients through the EHR may be guided by what patients value, offering opportunities to strengthen care partnerships between patients and clinicians.

Associations Between Organizational Communication and Patients' Experience of Prolonged Emotional Impact Following Medical Errors.

BACKGROUND: The emotional impact of medical errors on patients may be long-lasting. Factors associated with prolonged emotional impacts are poorly understood. METHODS: The authors conducted a subanalysis of a 2017 survey (response rate 36.8% [2,536/6,891]) of US adults to assess emotional impact of medical error. Patients reporting a medical error were included if the error occurred ≥ 1 year prior. Duration of emotional impact was categorized into no/short-term impact (impact lasting < 1 month), prolonged impact (> 1 month), and especially prolonged impact (> 1 year). Based on their reported experience with communication about the error, patients' experience was categorized as consistent with national disclosure guidelines, contrary to guidelines, mixed, or neither. Multinomial regression was used to examine associations between patient factors, event characteristics, and organizational communication with prolonged emotional impact (> 1 month, > 1 year). RESULTS: Of all survey respondents, 17.8% (451/2,536) reported an error occurring ≥ 1 year prior. Of these, 51.2% (231/451) reported prolonged/especially prolonged emotional impact (30.8% prolonged, 20.4% especially prolonged). Factors associated with prolonged emotional impact included female gender (adjusted odds ratio 2.1 [95% confidence interval 1.5-2.9]); low socioeconomic status (SES; 1.7 [1.1-2.7]); physical impact (7.3 [4.3-12.3]); no organizational disclosure and no patient/family error reporting (1.5 [1.03-2.3]); communication contrary to guidelines (4.0 [2.1-7.5]); and mixed communication (2.2 [1.3-3.7]). The same factors were significantly associated with especially prolonged emotional impact (female, 1.7 [1.2-2.5]; low SES, 2.2 [1.3-3.6]; physical impact, 6.8 [3.8-12.5]; no disclosure/reporting, 1.9 [1.2-3.2]; communication contrary to guidelines, 4.6 [2.2-9.4]; mixed communication, 2.1 [1.1-3.9]). CONCLUSION: Prolonged emotional impact affected more than half of Americans self-reporting a medical error. Organizational failure to communicate according to disclosure guidelines after patient-perceived errors may exacerbate harm, particularly for patients at risk of health care disparities.

What's going well: a qualitative analysis of positive patient and family feedback in the context of the diagnostic process.

OBJECTIVES: Accurate and timely diagnosis relies on close collaboration between patients/families and clinicians. Just as patients have unique insights into diagnostic breakdowns, positive patient feedback may also generate broader perspectives on what constitutes a "good" diagnostic process (DxP). METHODS: We evaluated patient/family feedback on "what's going well" as part of an online pre-visit survey designed to engage patients/families in the DxP. Patients/families living with chronic conditions with visits in three urban pediatric subspecialty clinics (site 1) and one rural adult primary care clinic (site 2) were invited to complete the survey between December 2020 and March 2022. We adapted the Healthcare Complaints Analysis Tool (HCAT) to conduct a qualitative analysis on a subset of patient/family responses with ≥20 words. RESULTS: In total, 7,075 surveys were completed before 18,129 visits (39 %) at site 1, and 460 surveys were completed prior to 706 (65 %) visits at site 2. Of all participants, 1,578 volunteered positive feedback, ranging from 1-79 words. Qualitative analysis of 272 comments with ≥20 words described: Relationships (60 %), Clinical Care (36 %), and Environment (4 %). Compared to primary care, subspecialty comments showed the same overall rankings. Within Relationships, patients/families most commonly noted: thorough and competent attention (46 %), clear communication and listening (41 %) and emotional support and human connection (39 %). Within Clinical Care, patients highlighted: timeliness (31 %), effective clinical management (30 %), and coordination of care (25 %). CONCLUSIONS: Patients/families valued relationships with clinicians above all else in the DxP, emphasizing the importance of supporting clinicians to nurture effective relationships and relationship-centered care in the DxP.

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.

OBJECTIVES: The 2021 US Cures Act may engage patients to help reduce diagnostic errors/delays. We examined the relationship between patient portal registration with/without note reading and test/referral completion in primary care. MATERIALS AND METHODS: Retrospective cohort study of patients with visits from January 1, 2018 to December 31, 2021, and order for (1) colonoscopy, (2) dermatology referral for concerning lesions, or (3) cardiac stress test at 2 academic primary care clinics. We examined differences in timely completion ("loop closure") of tests/referrals for (1) patients who used the portal and read ≥1 note (Portal + Notes); (2) those with a portal account but who did not read notes (Portal Account Only); and (3) those who did not register for the portal (No Portal). We estimated the predictive probability of loop closure in each group after adjusting for socio-demographic and clinical factors using multivariable logistic regression. RESULTS: Among 12 849 tests/referrals, loop closure was more common among Portal+Note-readers compared to their counterparts for all tests/referrals (54.2% No Portal, 57.4% Portal Account Only, 61.6% Portal+Notes, P < .001). In adjusted analysis, compared to the No Portal group, the odds of loop closure were significantly higher for Portal Account Only (OR 1.2; 95% CI, 1.1-1.4), and Portal+Notes (OR 1.4; 95% CI, 1.3-1.6) groups. Beyond portal registration, note reading was independently associated with loop closure (P = .002). DISCUSSION AND CONCLUSION: 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.

Gaps in the coordination of care for people living with dementia.

BACKGROUND: One-third of people living with dementia (PLWD) have highly fragmented care (i.e., care spread across many ambulatory providers without a dominant provider). It is unclear whether PLWD with fragmented care and their caregivers perceive gaps in communication among the providers involved and whether any such gaps are perceived as benign inconveniences or as clinically meaningful, leading to adverse events. We sought to determine the frequency of perceived gaps in communication (coordination) among providers and the frequency of self-reported adverse events attributed to poor coordination. METHODS: We conducted a cross-sectional study in the context of a Medicare accountable care organization (ACO) in New York in 2022-2023. We included PLWD who were attributed to the ACO, had fragmented care in the past year by claims (reversed Bice-Boxerman Index ≥0.86), and were in a pragmatic clinical trial on care management. We used an existing survey instrument to determine perceptions of care coordination and perceptions of four adverse events (repeat tests, drug-drug interactions, emergency department visits, and hospital admissions). ACO care managers collected data by telephone, using clinical judgment to determine whether each survey respondent was the patient or a caregiver. We used descriptive statistics to summarize results. RESULTS: Of 167 eligible PLWD, surveys were completed for 97 (58.1%). Of those, 88 (90.7%) reported having >1 ambulatory visit and >1 ambulatory provider and were thus at risk for gaps in care coordination and included in the analysis. Of those, 23 respondents were patients (26.1%) and 64 were caregivers (72.7%), with one respondent's role missing. Overall, 57% of respondents reported a problem (or "gap") in the coordination of care and, separately, 18% reported an adverse event that they attributed to poor care coordination. CONCLUSION: Gaps in coordination of care for PLWD are reported to be very common and often perceived as hazardous.

Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead.

BACKGROUND: Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors' office notes. OBJECTIVE: To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals. DESIGN: Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors' notes. SETTING: Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington. PARTICIPANTS: 105 PCPs and 13,564 of their patients who had at least 1 completed note available during the intervention period. MEASUREMENTS: Portal use and electronic messaging by patients and surveys focusing on participants' perceptions of behaviors, benefits, and negative consequences. RESULTS: 11,155 [corrected] of 13,564 patients with visit notes available opened at least 1 note (84% at BIDMC, 82% [corrected] at GHS, and 47% at HMC). Of 5219 [corrected] patients who opened at least 1 note and completed a postintervention survey, 77% to 59% [corrected] across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients' questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor's note. One out of 3 patients believed that they should be able to approve the notes' contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop. LIMITATIONS: Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability. CONCLUSION: Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption. PRIMARY FUNDING SOURCE: The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.

Diagnostic error experiences of patients and families with limited English-language health literacy or disadvantaged socioeconomic position in a cross-sectional US population-based survey.

BACKGROUND: Language barrier, reduced self-advocacy, lower health literacy or biased care may hinder the diagnostic process. Data on how patients/families with limited English-language health literacy (LEHL) or disadvantaged socioeconomic position (dSEP) experience diagnostic errors are sparse. METHOD: We compared patient-reported diagnostic errors, contributing factors and impacts between respondents with LEHL or dSEP and their counterparts in the 2017 Institute for Healthcare Improvement US population-based survey, using contingency analysis and multivariable logistic regression models for the analyses. RESULTS: 596 respondents reported a diagnostic error; among these, 381 reported LEHL or dSEP. After adjusting for sex, race/ethnicity and physical health, individuals with LEHL/dSEP were more likely than their counterparts to report unique contributing factors: "(No) qualified translator or healthcare provider that spoke (the patient's) language" (OR and 95% CI 4.4 (1.3 to 14.9)); "not understanding the follow-up plan" (1.9 (1.1 to 3.1)); "too many providers… but no clear leader" (1.8 (1.2 to 2.7)); "not able to keep follow-up appointments" (1.9 (1.1 to 3.2)); "not being able to pay for necessary medical care" (2.5 (1.4 to 4.4)) and "out-of-date or incorrect medical records" (2.6 (1.4 to 4.8)). Participants with LEHL/dSEP were more likely to report long-term emotional, financial and relational impacts, compared with their counterparts. Subgroup analysis (LEHL-only and dSEP-only participants) showed similar results. CONCLUSIONS: Individuals with LEHL or dSEP identified unique and actionable contributing factors to diagnostic errors. Interpreter access should be viewed as a diagnostic safety imperative, social determinants affecting care access/affordability should be routinely addressed as part of the diagnostic process and patients/families should be encouraged to access and update their medical records. The frequent and disproportionate long-term impacts from self-reported diagnostic error among LEHL/dSEP patients/families raises urgency for greater prevention and supportive efforts.

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.