Providing Adolescents with Access to Online Patient Portals: Interviews with Parent-Adolescent Dyads.

OBJECTIVE: To identify perceived benefits, problems, facilitators, and barriers to adolescent online patient portal use. STUDY DESIGN: Qualitative, semi-structured interviews with dyads of parents and adolescents with or without chronic illness. The study team purposively sampled for racial and ethnic minorities and fathers. Three team members then performed thematic analysis of the transcripts, with subsequent dyadic analysis of themes represented by related parents and adolescents. RESULTS: We performed 102 interviews with 51 dyads of parents and adolescents (26 with chronic illness, 25 without chronic illness). Nearly all participants believed that adolescents should be permitted portal access. We identified 4 themes related to portal benefits: improves adolescent's knowledge of health; supports medical self-management and autonomy; strengthens communication and relationships; and supports parental influence. We identified 4 themes related to portal problems: misunderstanding or confusion; emotional distress; strain on relationships; and irresponsible use of portal. Facilitators of portal use included severity of illness, adolescent's curiosity, and ease of technology use. Barriers included lack of awareness or interest, complexity of information, and access difficulties. Twenty adolescents (39%) did not know they could access the portal, and 23 (45%) lacked interest in portals. Parents and adolescents seldom used the portal as a collaborative tool, and instead were engaging with the portal independently. CONCLUSION: Parents and adolescents perceive several benefits and problems with portal use, but many adolescents lack interest in using portals. Adolescent portals represent an underutilized resource to engage adolescents in their care.

Guiding Principles for Adolescent Web-Based Portal Access Policies: Interviews With Informatics Administrators.

BACKGROUND: Web-based patient portals are tools that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents. OBJECTIVE: We aimed to assess the perspectives of informatics administrators on guiding principles for the development of web-based health care portal access policies in adolescent health care. METHODS: We interviewed informatics administrators from US hospitals with ≥50 dedicated pediatric beds. We performed a thematic analysis of guiding principles for developing and implementing adolescent portal access policies. RESULTS: We interviewed 65 informatics leaders who represented 63 pediatric hospitals, 58 health care systems, 29 states, and 14,379 pediatric hospital beds. Participants described 9 guiding principles related to three overarching themes: (1) balancing confidentiality and other care needs, (2) balancing simplicity and granularity, and (3) collaborating and advocating. Participants described the central importance of prioritizing the health and safety of the adolescent while also complying with state and federal laws. However, there were differing beliefs about how to prioritize health and safety and what role parents should play in supporting the adolescent's health care. Participants also identified areas where clinicians and institutions can advocate for adolescents, especially with electronic health record vendors and legislators. CONCLUSIONS: Informatics administrators provided guiding principles for adolescent portal access policies that aimed to balance the competing needs of adolescent confidentiality and the usefulness of the portal. Portal access policies must prioritize the adolescent's health and safety while complying with state and federal laws. However, institutions must determine how to best enact these principles. Institutions and clinicians should strive for consensus on principles to strengthen advocacy efforts with institutional leadership, electronic health record vendors, and lawmakers.

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.

Partnering with Patients and Families to Improve Diagnostic Safety through the OurDX Tool: Effects of Race, Ethnicity, and Language Preference.

BACKGROUND: Patients and families at risk for health disparities may also be at higher risk for diagnostic errors but less likely to report them. OBJECTIVES: This study aimed to explore differences in race, ethnicity, and language preference associated with patient and family contributions and concerns using an electronic previsit tool designed to engage patients and families in the diagnostic process (DxP). METHODS: Cross-sectional study of 5,731 patients and families presenting to three subspecialty clinics at an urban pediatric hospital May to December 2021 who completed a previsit tool, codeveloped and tested with patients and families. Prior to each visit, patients/families were invited to share visit priorities, recent histories, and potential diagnostic concerns. We used logistic regression to determine factors associated with patient-reported diagnostic concerns. We conducted chart review on a random subset of visits to review concerns and determine whether patient/family contributions were included in the visit note. RESULTS: Participants provided a similar mean number of contributions regardless of patient race, ethnicity, or language preference. Compared with patients self-identifying as White, those self-identifying as Black (odds ratio [OR]: 1.70; 95% confidence interval [CI]: [1.18, 2.43]) or "other" race (OR: 1.48; 95% CI: [1.08, 2.03]) were more likely to report a diagnostic concern. Participants who preferred a language other than English were more likely to report a diagnostic concern than English-preferring patients (OR: 2.53; 95% CI: [1.78, 3.59]. There were no significant differences in physician-verified diagnostic concerns or in integration of patient contributions into the note based on race, ethnicity, or language preference. CONCLUSION: Participants self-identifying as Black or "other" race, or those who prefer a language other than English were 1.5 to 2.5 times more likely than their counterparts to report potential diagnostic concerns when proactively asked to provide this information prior to a visit. Actively engaging patients and families in the DxP may uncover opportunities to reduce the risk of diagnostic errors and potential safety disparities.

A Year of Inpatient Telehealth: Lessons From the COVID-19 Pandemic.

BACKGROUND: Relaxation of telehealth regulation enforcement during the coronavirus disease 2019 pandemic opened the door to massive expansion. Here we describe inpatient telehealth usage across a pediatric academic hospital during the first year of the pandemic. METHODS: We created hospital bed-specific inpatient telehealth accounts and monitored their use over a 1 year period using data from our video conferencing vendor. We matched data with our enterprise data warehouse based on session date and time to identify patients who participated in telehealth. We performed secondary analysis of all video conferences to identify additional multidisciplinary team and family meetings that did not leverage the bed-specific telehealth accounts. RESULTS: We hosted 6931 inpatient telehealth sessions associated with 1648 unique patients. Hospitalized patients participating in telehealth sessions were older and had markedly longer length of stay compared with those who did not use telehealth (median age 12 vs 8 years, P < .001; median length of stay 9.03 vs 2.03 days, P < .001). There were 2006 charges for telehealth sessions, half of which were from psychiatry providers. Secondary analysis revealed an additional 1132 sessions used for interdisciplinary team or family meetings. CONCLUSIONS: Clinicians used inpatient telehealth to support care of hospitalized pediatric patients during the coronavirus disease pandemic, particularly for mental health care and family meetings. These findings suggest ongoing opportunities for inpatient telehealth systems beyond the pandemic.

Engaging Adolescents in Using Online Patient Portals.

Importance: Many health care systems offer adolescents access to health information through online patient portals, but few studies have explored how to engage adolescents in using and benefiting from online portals. Objective: To determine how US children's hospitals have attempted to encourage adolescent portal use, barriers to engaging adolescents, and ideal future goals for engagement. Design, Setting, and Participants: This qualitative study performed structured qualitative interviews with informatics administrators from children's hospitals across the US between February and July 2022. Informatics administrators were employed by US health care systems that managed a children's hospital with at least 50 dedicated pediatrics beds. Data analysis was performed from November 2022 to January 2023. Main Outcomes and Measures: This study used thematic analysis of (1) current steps that health care systems had taken to engage adolescents in using their online patient portals and (2) barriers to engaging adolescents and ideal future goals and outcomes of engagement. Results: Among 58 total interviews with 65 informatics administrators who represented 63 hospitals across 58 health care systems, 6 themes of approaches to engaging adolescents in portal use were identified: (1) promoting and educating adolescents about portal enrollment, (2) establishing workflows to support enrollment, (3) seeking and incorporating feedback, (4) creating a culture or environment supporting engagement, (5) increasing portal utility, and (6) limited efforts. Barriers to engaging adolescents in portal use related to either (1) stakeholder investment, interest, and capabilities or (2) intersecting technical, ethical, and legal factors. Participants identified 4 ideal future efforts to engage adolescents: (1) develop adaptable private means of communication with adolescents, (2) use adolescent-centric user design, (3) enhance promotion and education about portal use, and (4) simplify and adapt workflows to encourage enrollment. Participants described 3 ideal outcomes of this future engagement: (1) provide education about current health, (2) prepare for transition to adulthood, and (3) improve digital health education of adolescents. Conclusions and Relevance: In this qualitative study of informatics administrators, children's hospitals across the US were found to have varying degrees of efforts to engage adolescents in using their portals. Most of these efforts focused on supporting adolescent enrollment, but fewer efforts focused on making the portal useful and interesting to adolescents.

Patient and family contributions to improve the diagnostic process through the OurDX electronic health record tool: a mixed method analysis.

BACKGROUND: Accurate and timely diagnosis relies on sharing perspectives among team members and avoiding information asymmetries. Patients/Families hold unique diagnostic process (DxP) information, including knowledge of diagnostic safety blindspots-information that patients/families know, but may be invisible to clinicians. To improve information sharing, we co-developed with patients/families an online tool called 'Our Diagnosis (OurDX)'. We aimed to characterise patient/family contributions in OurDX and how they differed between individuals with and without diagnostic concerns. METHOD: We implemented OurDX in two academic organisations serving patients/families living with chronic conditions in three subspecialty clinics and one primary care clinic. Prior to each visit, patients/families were invited to contribute visit priorities, recent histories and potential diagnostic concerns. Responses were available in the electronic health record and could be incorporated by clinicians into visit notes. We randomly sampled OurDX reports with and without diagnostic concerns for chart review and used inductive and deductive qualitative analysis to assess patient/family contributions. RESULTS: 7075 (39%) OurDX reports were submitted at 18 129 paediatric subspecialty clinic visits and 460 (65%) reports were submitted among 706 eligible adult primary care visits. Qualitative analysis of OurDX reports in the chart review sample (n=450) revealed that participants contributed DxP information across 10 categories, most commonly: clinical symptoms/medical history (82%), tests/referrals (54%) and diagnosis/next steps (51%). Participants with diagnostic concerns were more likely to contribute information on DxP risks including access barriers, recent visits for the same problem, problems with tests/referrals or care coordination and communication breakdowns, some of which may represent diagnostic blindspots. CONCLUSION: Partnering with patients and families living with chronic conditions through OurDX may help clinicians gain a broader perspective of the DxP, including unique information to coproduce diagnostic safety.

Variation in pediatric and adolescent electronic health data sharing practices under the 21st Century Cures Act.

OBJECTIVE: To describe real-world practices and variation in implementation of the Information Blocking provisions amongst healthcare organizations caring for pediatric patients. MATERIALS AND METHODS: An online survey regarding implementation practices was distributed to representatives from 10 participating US healthcare organizations located in 6 different states. The survey was followed by structured interviews conducted through video conference. Information was gathered about implementation practices at each organization, with a focus on patient and proxy portal access to, and segmentation capabilities of, certain data classes listed in the United States Core Data for Interoperability Version 1. RESULTS: All organizations had implemented the information blocking provisions at their institution. All organizations utilized different portal account types for proxies and users. All organizations reported the capability of sharing labs, medications, problem lists, imaging, and notes with the parent/guardian of the non-adolescent minor user with differences in how sensitive elements within the data classes were protected. Variability existed in how data was shared with the remaining user types. DISCUSSION: Significant variability exists in how organizations have implemented the information blocking rules. Variation in data sharing and data access between institutions can result in privacy breaches and create confusion about completeness of data for patients and families. CONCLUSION: Healthcare organizations have utilized varying strategies to comply with the information blocking provisions of the 21st Century Cures Act. Increased clarity from the Office of the National Coordinator for Health Information Technology on minor, adolescent, and caregiver privacy and improved segmentation capabilities from Electronic Health Record vendors is needed.

Challenges to Developing and Implementing Policies for Adolescent Online Portal Access.

BACKGROUND: After enactment of the 21st Century Cures Act, many health care systems offer adolescents and parents access to electronic health information through online portals. Few studies have evaluated adolescent portal access policies since the implementation of the Cures Act. METHODS: We performed structured interviews with informatics administrators in US hospitals with ≥50 dedicated pediatric beds. We performed thematic analysis of challenges to developing and implementing adolescent portal policies. RESULTS: We interviewed 65 informatics leaders representing 63 pediatric hospitals, 58 health care systems, 29 states, and 14 379 pediatric hospital beds. Most hospitals provided portal access to adolescents (86%) and parents (95%). Filtering of results sent to parental portals ranged widely, with 14% providing unfiltered access, 31% performing minimal filtering for sensitive information, and 43% offering limited access. Portal access policies also varied widely within states. Challenges to developing policies included legislation and compliance issues, tension between confidentiality and usefulness, clinicians' preferences and concerns, limited understanding and investment of institutions in pediatric issues, and limited focus of vendors on pediatric issues. Challenges to implementing policies included technical challenges, educating end-users, potential for parental coercion, harms of bad news, complex enrollment processes, and informatics workforce limitations. CONCLUSIONS: Adolescent portal access policies vary widely across and within states. Informatics administrators identified multiple challenges related to developing and implementing adolescent portal policies. Future efforts should strive to develop intrastate consensus on portal policies and to engage parents and adolescent patients to better understand preferences and needs.

A Patient Portal Intervention to Promote Adolescent and Young Adult Self-Management Skills.

OBJECTIVE: Failure to transfer care to adult medicine is associated with gaps in health care access and poor health outcomes among young adults. We examined whether a patient portal educational intervention is acceptable and can improve adolescent and young adult (AYA) self-management skills toward transition readiness to adult care. METHODS: We conducted a single site feasibility study using a mixed research method consisting of 1) a patient portal one-on-one educational intervention with pre- and postsurveys adapted from the Transition Readiness Assessment Questionnaire to assess participant self-management skills and portal user activity; 2) portal user experience was assessed through semistructured interviews until thematic saturation was reached. Study participants were 13 to 25 years old and received care at an academic-affiliated community pediatric clinic. Descriptive statistics were used to describe participant characteristics, paired t tests, or Wilcoxon signed-rank tests to assess outcomes of survey response changes pre- versus postintervention. RESULTS: Sixty percent of enrolled participants (N = 78) completed the surveys. Following the educational intervention, we observed an increase in participants self-reporting knowing how to access their protected health information P < .0001, (95%, confidence interval [CI], 1-2) and in the proportion of participants self-reporting to strongly agree to know their medication P = .025 (95%, CI 0-1). We also observed an increase in portal user access at 3 weeks; the median number of logins was 2 per participant (range 1-36, P < .0001). The Portal user experience was strongly positive. CONCLUSION: Our patient portal educational intervention suggests that AYAs welcome a patient portal to access protected health information and is associated with an increase in the proportion of participants self-reporting to strongly agree with knowing their medication. While these results are encouraging, this is a quasiexperimental study designed on the frame of feasibility. Our study was not adequately powered, limiting our findings' significance. Future interventions would benefit from a larger sample size with a comparison group to ascertain the effect of a patient portal on self-management skills in a diverse AYA population and inform best practices.

A Prescription for Internet: Feasibility of a Tablet Loaner Program to Address Digital Health Inequities.

OBJECTIVE: The coronavirus disease 2019 pandemic accelerated the adoption of telehealth technologies. Persistent disparities in telecommunication devices, internet connectivity, and digital literacy, however, undermine the potential for telemedicine to reduce barriers to health care access. Health systems may have a role in addressing these structural inequities. We describe the operationalization and feasibility of an internet-enabled tablet loaner program at a freestanding children's hospital. METHODS: Between October 2020 and October 2021, pediatricians enrolled families through ambulatory clinics at an academic urban freestanding children's hospital. Eligibility criteria included difficulty accessing virtual care due to lack of stable internet or device. Tablets featured an unlimited data package, access to the patient portal, and virtual visit platform. A private technology company managed device configuration and distribution. To characterize program impact, we compared the proportion of completed clinical encounters during the intervention compared with a preintervention period (March 2020-October 2020) and conducted a qualitative survey with program participants. Participant and visit characteristics were obtained from the electronic medical record and summarized with descriptive statistics. RESULTS: A total of 111 families participated in the tablet loaner program, the majority of whom were Hispanic (51.4%) and black, non-Hispanic (26.1%), and publicly insured (64.9%). Between the preintervention and intervention periods, there was a significant increase in completed video- and phone-based virtual visits (75.3 vs. 79.1%, p = 0.038). The proportion of video-based only visits increased from 82.9 to 88.9%. p < 0.001. Families reported that the tablet improved the patient's ability to receive medical care (93.7%) and was easy to use (93.9%). CONCLUSION: The tablet loaner initiative was associated with an improvement in markers of virtual visit engagement and health care experience. Efforts to expand telemedicine equity must consider technological access and digital literacy as well as broad coalitions across industry, government, and community organizations.

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.

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.

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.

Inpatient Telehealth Experience of Patients With Limited English Proficiency: Cross-sectional Survey and Semistructured Interview Study.

BACKGROUND: Patients with limited English proficiency (LEP) are at a higher risk of poor health outcomes and are less likely to use telehealth than English-speaking patients. To date, there is no formal evaluation of inpatient (IP) telehealth user experience of patients and their families by language preference during visits with their clinicians. OBJECTIVE: This study aims to compare the experiences of English- and Spanish-speaking patients and their families using IP telehealth, as well as to evaluate the experience of Spanish interpreters providing services through IP telehealth. METHODS: We prospectively administered a survey to English- and Spanish-speaking patients and their families who used IP telehealth from October 1, 2020, to March 31, 2021. We performed semistructured phone interviews of hospital-based Spanish interpreters who provided services through IP telehealth. RESULTS: A total of 661 surveys were administered, with completion rates of 18% (112/621) in English and 62% (25/40) in Spanish. On a 10-point scale, the overall satisfaction of Spanish speakers (median 10, IQR 10-10) was higher than that of English speakers (median 9, IQR 8-10; P=.001). Both English- and Spanish-speaking patients used IP telehealth for visits with their primary IP care team, subspecialty consultants, and other clinicians. Hospital tablets were used more often than personal devices, and only English-speaking patients used personal laptops. Patients and their families encountered challenges with log-in, team coordination with multiple users, and equipment availability. Interpreters encountered challenges with audio and video quality, communication, safety, and Wi-Fi access. CONCLUSIONS: Both English- and Spanish-speaking patients reported high satisfaction using IP telehealth across multiple disciplines despite the workflow challenges identified by interpreters. Significant investment is needed to provide robust infrastructure to support use by all patients, especially the integration of multiple users to provide interpreter services for patients with LEP.

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.

BACKGROUND: Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician's view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient-reported diagnostic process-related breakdowns (PRDBs) to inform organisational learning. METHOD: A multi-stakeholder advisory group including patients, families, clinicians, and experts in diagnostic error, patient engagement and safety, and user-centred design, co-developed a framework for PRDBs in ambulatory care. We tested the framework using standard qualitative analysis methods with two physicians and one patient coder, analysing 2165 patient-reported ambulatory errors in two large surveys representing 25 425 US respondents. We tested intercoder reliability of breakdown categorisation using the Gwet's AC1 and Cohen's kappa statistic. We considered agreement coefficients 0.61-0.8=good agreement and 0.81-1.00=excellent agreement. RESULTS: The framework describes 7 patient-reported breakdown categories (with 40 subcategories), 19 patient-identified contributing factors and 11 potential patient-reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance. The frequency of PRDBs was 6.4% in one dataset and 6.9% in the other. Intercoder reliability showed good-to-excellent reliability in each dataset: AC1 0.89 (95% CI 0.89 to 0.90) to 0.96 (95% CI 0.95 to 0.97); kappa 0.64 (95% CI 0.62, to 0.66) to 0.85 (95% CI 0.83 to 0.88). CONCLUSIONS: 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.

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

The Cures Act made access to electronic visit notes ('open notes') nearly universal across the USA, and efforts to share open notes with patients are underway worldwide. This landmark policy change provides an opportunity to engage adolescents and young adults (AYA) early in their care, yet little is known about their attitudes related to reading notes. We compared the responses of 332 AYA (13-25 years old) and 6,914 adults (>25 years old) in a 2016 survey at two USA academic adult and paediatric hospitals. Over 85% of AYA and adults with available notes reported reading at least one note in the prior year. AYA reported similar benefits from note-reading to adults in 15 outcomes related to engagement, relational effects and safety behaviours, supporting efforts to engage AYA as partners in their care using open notes.

Tackling Ambulatory Safety Risks Through Patient Engagement: What 10,000 Patients and Families Say About Safety-Related Knowledge, Behaviors, and Attitudes After Reading Visit Notes.

BACKGROUND: Ambulatory safety risks including delayed diagnoses or missed abnormal test results are difficult for clinicians to see, because they often occur in the space between visits. Experts advocate greater patient engagement to improve safety, but strategies are limited. Patient access to clinical notes ("OpenNotes") may help close the safety gap between visits. METHODS: We surveyed patients and families who logged on to the patient portal and had at least one ambulatory note available in the past 12 months at two academic hospitals during June to September 2016, focusing on patient-reported effects of OpenNotes on safety knowledge, behaviors, and attitudes. RESULTS: A total of 6913 (28%) of 24,722 patients at an adult hospital and 3672 (17%) of 21,579 participants at the children's hospital submitted surveys. Approximately 75% of patients and parents each reported that reading notes helped them understand the reason for both tests and referrals, and approximately 50% felt that it helped them complete tests and referrals. Roughly 75% of participants were more likely to check and understand test results. Overall, 97% of participants reported that trust in the provider, activation, patient-provider goal alignment, and teamwork were each better or the same after reading 1 note or more. Nonwhite participants and those with high school education or less were 30% to 50% more likely to report that reading notes helped them complete tests compared with white and more educated respondents, respectively. CONCLUSIONS: Overall, the majority of more than 10,000 patients and parents reported reading notes helped them understand and follow through on tests and referrals. As information transparency spreads, OpenNotes can help activate patients and families, facilitate safety behaviors, and forge stronger partnerships with clinicians.

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.