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 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.

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.

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.

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%. Although study participants exhibit low self-management skills and awareness of a patient portal, most welcome using it to manage their health. Further research is needed to validate whether a patient portal can promote self-management skills towards transition readiness among Hispanic youths.

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.

Estimating the economic impact of a possible equine and human epidemic of West Nile virus infection in Belgium.

This study aimed at estimating, in a prospective scenario, the potential economic impact of a possible epidemic of WNV infection in Belgium, based on 2012 values for the equine and human health sectors, in order to increase preparedness and help decision-makers. Modelling of risk areas, based on the habitat suitable for Culex pipiens, the main vector of the virus, allowed us to determine equine and human populations at risk. Characteristics of the different clinical forms of the disease based on past epidemics in Europe allowed morbidity among horses and humans to be estimated. The main costs for the equine sector were vaccination and replacement value of dead or euthanised horses. The choice of the vaccination strategy would have important consequences in terms of cost. Vaccination of the country's whole population of horses, based on a worst-case scenario, would cost more than EUR 30 million; for areas at risk, the cost would be around EUR 16-17 million. Regarding the impact on human health, short-term costs and socio-economic losses were estimated for patients who developed the neuroinvasive form of the disease, as no vaccine is available yet for humans. Hospital charges of around EUR 3,600 for a case of West Nile neuroinvasive disease and EUR 4,500 for a case of acute flaccid paralysis would be the major financial consequence of an epidemic of West Nile virus infection in humans in Belgium.

Multidisciplinary and evidence-based method for prioritizing diseases of food-producing animals and zoonoses.

To prioritize 100 animal diseases and zoonoses in Europe, we used a multicriteria decision-making procedure based on opinions of experts and evidence-based data. Forty international experts performed intracategory and intercategory weighting of 57 prioritization criteria. Two methods (deterministic with mean of each weight and probabilistic with distribution functions of weights by using Monte Carlo simulation) were used to calculate a score for each disease. Consecutive ranking was established. Few differences were observed between each method. Compared with previous prioritization methods, our procedure is evidence based, includes a range of fields and criteria while considering uncertainty, and will be useful for analyzing diseases that affect public health.

Patients treated across multiple sites of care: a case for personally controlled health records.

Patients frequently present to multiple hospitals for acute care visits, resulting in incomplete medical records at any given site, and placing patients at risk for poor quality of care. Our objective was to determine the number of patients presenting for their acute care needs across multiple hospitals in Massachusetts over a three year period. There were 665,481 adult patients who presented to a median of 2 different hospitals (range 2-55) in the course of the study period. Integration of medical information across sites, such as through personally controlled health records, could improve the availability of medical information across sites of care.