The substance-exposed birthing person-infant/child dyad and health information exchange in the United States.

Objective: Timely access to data is needed to improve care for substance-exposed birthing persons and their infants, a significant public health problem in the United States. We examined the current state of birthing person and infant/child (dyad) data-sharing capabilities supported by health information exchange (HIE) standards and HIE network capabilities for data exchange to inform point-of-care needs assessment for the substance-exposed dyad.

Material And Methods: A cross-map analysis was performed using a set of dyadic data elements focused on pediatric development and longitudinal supportive care for substance-exposed dyads (70 birthing person and 110 infant/child elements).

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.

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.

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.

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.

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.

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.

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)'.

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.

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.

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.

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

Unlabelled: 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.

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.

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.

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.

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.

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.

Preserving privacy for pediatric patients and families: use of confidential note types in pediatric ambulatory care.

Objective: This study evaluates and characterizes the use of a confidential clinic note type as part of the implementation of open notes at a free-standing children's hospital. We describe how this electronic health record feature which disables patient and family access to selected notes in the patient portal is used across our institution, which clinicians are using this feature, and the type of data our clinicians consider confidential.

Materials And Methods: Through retrospective chart review, we have evaluated the use of a confidential note type over a 1-year period.

Rapid Implementation of an Inpatient Telehealth Program during the COVID-19 Pandemic.

Background:  Relaxation of laws and regulations around privacy and billing during the COVID-19 pandemic provide expanded opportunities to use telehealth to provide patient care at a distance. Many health systems have transitioned to providing outpatient care via telehealth; however, there is an opportunity to utilize telehealth for inpatients to promote physical distancing.

Objective:  This article evaluates the use of a rapidly implemented, secure inpatient telehealth program.

Assessment of: self-management skills towards transition readiness and patient portal use among Hispanic adolescent and young adult patients.

We conducted a 15-item self-answered survey to assess self-management skills and explore interest in a patient portal among publicly insured Hispanic youths ages 12-25. Out of 61 participants, 33% did not know how to schedule an appointment, 50% how to refill prescriptions, 58% how to access their personal health information, 84% were unaware of the portal and 92% never used it. Referring to the portal as an online application increased participants interest by 39%.

A patient and family reporting system for perceived ambulatory note mistakes: experience at 3 U.S. healthcare centers.

Objective: The study sought to test a patient and family online reporting system for perceived ambulatory visit note inaccuracies.

Materials And Methods: We implemented a patient and family electronic reporting system at 3 U.S.