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This paper reconsiders the outpacing argument, the belief that changes in law and other means of regulation cannot keep pace with recent changes in technology. We focus on information and communication technologies (ICTs) in and of themselves as well as applied in computer science, telecommunications, health, finance, and other applications, but our argument applies also in rapidly developing technological fields such as environmental science, materials science, and genetic engineering. First, we discuss why the outpacing argument is so closely associated with information and computing technologies. We then outline 12 arguments that support the outpacing argument, by pointing to some particular weaknesses of policy making, using the United States as the primary example. Then arguing in the opposite direction, we present 4 brief and 3 more extended criticisms of the outpacing thesis. The paper's final section responds to calls within the technical community for greater engagement of policy and ethical concerns and reviews the paper's major arguments. While the paper focuses on ICTs and policy making in the United States, our critique of the outpacing argument and our exploration of its complex character are of utility to actors in other political contexts and in other technical fields. [ABSTRACT FROM AUTHOR]

Purpose: The study examines the mediating role of accounting information quality (AQ), a proxy for firms' information risk, in firms' business strategy and the cost of equity (COE) nexus to highlight how AQ provides a mechanism through which a company's business strategy affects its COE. Design/methodology/approach: The research study utilises data from 12,100 firm-year observations of United States (US) non-financial firms from 2001 to 2017, drawn from multiple databases, and employs the bootstrapping method of mediation analysis to test the indirect effect of AQ on the business strategy–COE relationship. The authors rely on Miles and Snow's two pure business strategy typologies, prospectors and defenders and use innate accrual quality and implied COE models to measure AQ and COE, respectively. Findings: The results suggest that AQ partially mediates the relationship between business strategy and COE. The authors document that while innovative-oriented prospector firms have a lower AQ and a higher implied COE, efficiency-oriented defenders are associated with a higher AQ and lower COE. The higher (lower) COE of prospector (defender) firms is observed to be partly due to their lower (higher) AQ. The results indicate that while the idiosyncratic risk implied in firms' strategic orientation can directly influence their COE, the business strategy implications on firms' COE can be indirect through their AQ, a source of information risk. Research limitations/implications: Due to data limitation, it was not possible to measure all possible methods of measuring implied COE. Practical implications: The paper highlights the role of firm's business strategy in pricing decisions by investors. Originality/value: The paper contributes to the existing literature by providing evidence that AQ, a proxy for information risk, is a mechanism through which business strategy affects firms' COE. The authors thus complement extant literature to empirically test the information risk effect inherent in strategic orientation on security pricing. [ABSTRACT FROM AUTHOR]

Background: The state of evidence-based transgender healthcare in the United States has been put at risk by the spread of misinformation harmful to transgender people. Health science librarians can alleviate the spread of misinformation by identifying and analyzing its flow through systems that affect access to healthcare. Discussion: The author developed the theory of the Misinformation - Legislation Pipeline by studying the flow of antitransgender misinformation from online echo chambers through a peer-reviewed article and into policy enacted to ban medical treatments for transgender people in the state of Florida. The analysis is precluded with a literature review of currently accepted best practices in transgender healthcare, after which, the author analyzes the key report leveraged by Florida's Department of Health in its ban. A critical analysis of the report is followed by a secondary analysis of the key peer-reviewed article upon which the Florida Medicaid authors relied to make the decision. The paper culminates with a summation of the trajectory of anti-transgender misinformation. Conclusion: Misinformation plays a key role in producing legislation harmful to transgender people. Health science librarians have a role to play in identifying misinformation as it flows through the Misinformation - Legislation Pipeline and enacting key practices to identify, analyze, and oppose the spread of harmful misinformation. [ABSTRACT FROM AUTHOR]

Purpose: A broader challenge of co-creating digital solutions with patients addresses the question how to apply an open-access digital platform with trusted digital health information as a measure to transform the way patients access and understand health information. It further addresses use this for adherence to treatment, risk minimization and quality of life throughout the integrated patient journey. The aim of this paper is to demonstrate the early steps in towards progress to co-creating the digital solution. Design/methodology/approach: To coordinate the co-creation process, the authors established a multiphased plan to deep-dive into user needs and behaviors across patient journeys, to identify nuances and highlight important patterns in stakeholder and end-user segment at various stages in the patient's journey. Findings: A set of tools was designed to serve as a human-centered compass throughout the lifecycle of the project. Those tools include shared objects; personas, user journeys, a set of performance indicators with related requirements – all those tools being consistently refined in ongoing co-creation workshops with members of the cross-functional stakeholder groups. Originality/value: In this study, a multidisciplinary, public-private partnership looked at integrated digital tool to improve access, understanding and adherence to treatment for diverse groups of patients across all stages of their health journeys in a number of countries including European Union (EU) and United States of America (USA). As a result of this work, the authors attempt to increase the possibility that the improved availability and understanding of health information from trusted sources translates to higher levels of adherence to treatment, safer use of medication (pharmacovigilance), better health outcomes and quality of life integrated in the patient's journey. [ABSTRACT FROM AUTHOR]

Disaster experiences and explorations of preparedness among Asian, Pacific Islander, and Desi Americans (APIDA) in the United States are often overlooked owing to their relatively smaller population share. APIDA are not homogenous, and their disaster experiences warrant further examination. This paper does so by investigating disaster preparedness using disaggregated information about APIDA. The study utilises nationally representative data from the 2017 American Housing Survey, analysing sociodemographic covariates. The disaster preparedness score among APIDA communities was approximately 4.81 on a zero to nine scale. APIDA renters and non‐US citizens were less prepared than homeowners and US citizens. Among subgroups, Korean, Chinese, and Vietnamese respondents who were non‐US citizens were less prepared than those who were US citizens. Marital status was significantly and positively associated with preparedness among Indians, Japanese, Vietnamese, and multiracial respondents. The findings underscore the importance of data disaggregation and tailored preparedness information and resources to address specific challenges APIDA communities face instead of a one‐size‐fits‐all approach. [ABSTRACT FROM AUTHOR]

Public libraries in the United States (U.S.) are important sources of health information. Immigrants comprise a large portion of the U.S. population, and research suggests that public libraries help immigrants adjust to life in a new country. Public libraries help immigrants access information directly related to health and provide programs that have indirect impacts on health outcomes, including learning a new language and forging social ties. The purpose of this paper was to examine perspectives from librarians related to interactions with immigrant patrons and how their library supports them in this role. Public librarians (n = 205) from two selected U.S. states completed an online survey focusing on how comfortable they were in helping immigrants with inquiries related to health and the role of the public library in supporting librarians in this endeavor. Respondents generally reported high levels of comfort interacting with immigrants, although there was limited interaction on potentially sensitive topics (i.e., immigration, health). Library staff perceived that libraries overall were not effective in meeting the needs of immigrant populations and that librarians were infrequently offered professional training related to cultural competency and diversity. The findings echo previous studies that demonstrate the need for professional development to ensure that librarians are aware of library resources available to assist immigrant patrons. Findings from this study suggest opportunities for public health professionals and public librarians to collaborate to ensure the provision of reliable resources, health information, and referrals to community-based services. [ABSTRACT FROM AUTHOR]

Medical mistrust among the public was amplified during the COVID-19 pandemic due to racial and social inequities in infection rates and misinformation in the media. In Boston, two initiatives were launched by the Boston University Clinical Translational Science Institute (BU CTSI), Boston Medical Center (BMC), community health centers (CHCs), and community organizations to establish longitudinal and authentic partnerships with community-research boundary spanners who remained trusted sources of information. Each initiative addressed the immediate need for community-informed and partnered COVID research and provided a structure for longitudinal partnerships. In this paper, we describe the process of envisioning how these two initiatives could move from isolation toward collective impact. We also identify opportunities to improve community-engaged research practices within an academic health system. Our approach provides a structure that other organizations can use to align initiatives and move toward boundary-crossing partnerships which foster health equity. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disabilities have the right to access appropriate and comprehensive sexuality and relationship education (SRE), but face a long history of exclusion from SRE in the USA due to myths about the sexuality of people with intellectual and developmental disabilities, biases against people with disabilities, and segregationist educational policies. Additionally, people with autism/autistic people are more likely to report having an LGBTQIA+ identity, and need comprehensive SRE content to become socially competent members of their communities. Teachers and other practitioners are often placed in the uncomfortable position of addressing many SRE topics while feeling unprepared, trying to stay aligned with educational policies, managing caregiver expectations, and providing scientifically accurate fact-based information in an increasingly politicised social climate. This paper provides recommendations on how to teach about LGBTQIA+ issues to students with intellectual and developmental disabilities including recommendations for modifying existing SRE curricula, identifying effective instructional strategies, and outlining a process for including LGBTQIA+ identities in SRE content. [ABSTRACT FROM AUTHOR]

Background: Social determinants of health (SDOH) are the non-medical factors that impact health. Although geographical measures of deprivation are used, individual measures of social risk could identify those most at risk and generate more personalised care and targeted referrals to community resources. We know SDOH are important to health care, but it is not yet known whether their collection via the electronic health record (EHR) is acceptable and useful from the patient perspective. Aim: To synthesise relevant literature to explore patient perspectives on integrating information about SDOH into primary care EHRs, and the opportunities and challenges of its implementation in a general practice setting. Design & setting: Systematic review of primary care-based qualitative and mixed-method studies using thematic framework analysis. Method: Key databases were searched for articles reporting patient perspectives of SDOH collection within the primary care EHR. Qualitative and mixed-methods studies written in English were included. A framework analysis was conducted to identify themes. Results: From 14 included studies, the following five main themes were identified: rationale for SDOH screening and the anticipated outcomes; impact of the provider-patient relationship on patient perceptions; data, which included privacy concerns; screening process and referral; and recommendations for future research. Conclusion: Integration of information on SDOH into the EHR appears acceptable to patients. This review has added to the discussion of whether and how to implement SDOH screening and referral programmes into UK primary care systems. [ABSTRACT FROM AUTHOR]

The global rise of populism and concomitant polarizations across disenfranchised and marginalized groups has been magnified by so-called echo chambers, and a major public health crisis like the COVID-19 pandemic has only served to fuel these intergroup tensions. Media institutions disseminating information on ways to prevent the propagation of the virus have reactivated a specific discursive phenomenon previously observed in many epidemics: the construction of a defiled 'Other'. With anthropological lenses, discourse on defilement is an interesting path to understand the continuous emergence of pseudo-scientific forms of racism. In this paper, the authors focus on 'borderline racism', that is the use of an institutionally 'impartial' discourse to reaffirm the inferiority of another race. The authors employed inductive thematic analysis of 1200 social media comments reacting to articles and videos published by six media in three different countries (France, United States and India). Results delineate four major themes structuring defilement discourses: food (and the relationship to animals), religion, nationalism and gender. Media articles and videos portrayed Western and Eastern countries through contrasting images and elicited a range of reaction in readers and viewers. The discussion reflects on how borderline racism can be an appropriate concept to understand the appearance of hygienic othering of specific subgroups on social media. Theoretical implications and recommendations on a more culturally sensitive approach of media coverage of epidemics and pandemics are discussed. [ABSTRACT FROM AUTHOR]

Health policy plays a critical role in determining a state's or nation's overall population health, and health system change has been a priority for a majority of Americans for at least a decade. News coverage can influence health policy development, but little research has examined the quality of that coverage, in part because no consensus exists regarding what information health policy stories should include. This paper describes a series of in-depth interviews with eight health policy experts and 12 experienced journalists who have covered health policy. While rejecting the notion of strict quality criteria that could be applied to all health policy stories, the interviewees agreed on several factors that would improve health policy coverage. They recommended that health policy stories should include information about financial costs to consumers, evidence that a policy will have its intended effect, historical context for the policy, and "relatable hooks" that help consumers understand which groups a policy will affect and how. In addition, the interviewees stressed the importance of building policy coverage on trustworthy sources representing multiple viewpoints and the need to recognize how audience members' values influence their acceptance and interpretation of evidence. These findings provide an important foundation for future research examining the impact of health policy reporting on both public opinion and public policy development. [ABSTRACT FROM AUTHOR]

The Health Information National Trends Survey (HINTS) is a well-established U.S.-based research program administered by the National Cancer Institute to track the public access to and use of health information. This paper introduces a German research initiative, part of the International Studies to Investigate Global Health Information Trends (INSIGHTS) research consortium. This adaptation of the HINTS is important for initiating analyses of global health communication practices and comparing health information seeking behaviors (HISB) across nations to pinpoint potentials and challenges of health information provision and contribute to a deeper understanding of socio-contextual determinants of HISB. First cross-country comparisons revealed that the share of residents seeking for health information is high in the U.S. (80%) and Germany (74%), but different primary sources are used. Whereas a clear majority of U.S. residents chose the Internet to gather health information (74.9%), Germans most often turn to health professionals (48.0%). Socio-structural and health(care)-related predictors were found to contribute to the explanation of HISB in both countries, whereas information-related predictors were only relevant in Germany. The results indicate the need to engage in patient-provider communication to initiate HISB and to improve the access to information for residents with lower socio-economic backgrounds. [ABSTRACT FROM AUTHOR]

Social media represents a significant source of health information for the public, especially during the COVID-19 pandemic where gatherings are limited. It is important for pediatric physical medicine and rehabilitation physicians to understand how their patients use these platforms in order to educate the public and provide sound medical advice on social media. Given the lack of current guidelines on medical education through social media, the purpose of this paper is to provide an overview of various online social media platforms and describe how they can be utilized to enhance pediatric patient education. It is necessary to understand the different educational functions and limitations of the various social media platforms. This text provides a comprehensive overview of different social media platforms, their educational uses, limitations, and sample accounts. Relevant to the COVID-19 pandemic, social media can improve the efficiency of educational delivery and clinic workflow. Although social media is not meant to replace physician-patient relationships, it can be used as a surrogate for health information and improve— even start— physician-patient relationships. Despite the benefits of social media, pediatric physiatrists may be hesitant to utilize these platforms for several reasons. This text provides an overview of common barriers to social media usage by physicians and recommendations to overcome them. Given that the pandemic has led to increased social media usage, physicians should be aware of its implications on patient care and how they can be used to enhance the practice of pediatric physical medicine and rehabilitation. As social media usage by both patients and physicians grows, more research is needed to create recommendations on how pediatric physiatrists can best utilize social media to educate the public in an enjoyable manner while maintaining a professional image. [ABSTRACT FROM AUTHOR]

This paper describes the findings of a quantitative study of 1,698 public library websites in Australia, Canada, and the United States over a period of three years using a spreadsheet protocol. The purpose of the research was to evaluate public library websites, available online sources, and whether library staff were available to respond to users' questions and concerns regarding the website. Descriptive statistics are used to report the results. The study provides public library website information regarding which protocol criteria each country's libraries attained. [ABSTRACT FROM AUTHOR]

Information and communication technology for development (ICT4D) research sporadically leverages information science scholarship. Our qualitative study employs the "information grounds" (IG) lens to investigate the consequences of information exchanges by pregnant women on Facebook, who are vulnerable in the doctor‐centric birth culture in rural America. The thematic analysis of in‐depth interviews with members and administrators of the Vaginal Birth After Cesarean (VBAC) group shows that positive consequences outweigh negative consequences of information exchanges and lead to the following progression of outcomes: (a) VBAC group as an information ground, (b) social capital (e.g., cognitive, structural, and relational capital) built on the information ground, (c) seven emergent properties of the information ground, and (d) value co‐created (e.g., local, affordable, timely, enduring, and reliable support) by VBAC group members. The IG lens reveals the following roles of Facebook, an ICT, in development: (a) a linker that lets people with similar needs and interests convene and shapes their interactions, (b) a prerequisite to building an online, "third place" for social interactions, and (c) an apparatus for ubiquitously seeking, searching, sharing, and storing information in multiple formats and controlling its flow on the VBAC group. This paper fills in six gaps in the ICT4D research. [ABSTRACT FROM AUTHOR]

Background: Insights, when acted upon, can result in positive changes to the business, for HCPs, and ultimately for patients. Medical Information, as a customer facing function, is one of the groups that generate insights. Data and insights across different functions of an organization need to be compiled to provide a comprehensive view. The purpose of this paper is to develop a shared definition of insights and to provide a working guidance for the insight process. Methods: Two surveys were conducted of the phactMI membership first to establish a shared definition of insights and then to benchmark current insight process. From this data and the shared experience of the working group a proposed guidance was developed. Results: The developed definition of an insight is "An insight is the deeper understanding of the why behind trends of information that lead us to determine if an action is warranted". For the most robust outcomes, insight identification needs to be a cross functional activity. The proposed structured approach can be leveraged and customized for any organization and include the following five steps: INvestigate, Scrutinize, Identify, Take Action, and Enlighten (INSITE). Conclusion: The INSITE process provides a simple framework that should become routine for all Medical Information colleagues who are leading the work around insights. The process should be shared across all functions that participate in the insight generation process. This is another area where Medical Information can demonstrate leadership and highlight their value to the organization. [ABSTRACT FROM AUTHOR]

Background: The majority of gun violence in the United States does not result in physical injury and therefore cannot be completely measured using hospital data. To measure the full scope of gun violence, the nation's crime reporting systems that collect police reports of crimes committed with a firearm are vital. However, crime data reporting conventions may underestimate gun violence in the U.S. This paper compares crime data sources to assess underestimation of gun violence. Findings: The Federal Bureau of Investigation's Summary Reporting System (SRS) and National Incident Based Reporting System (NIBRS) measures of gun violence were compared in 2019 for states comprehensively reporting data to both systems. Gun violence is underestimated in the SRS compared to NIBRS. Within the sample, 18.8% more aggravated assaults with a firearm are recorded and 2.1% more robberies with a firearm are recorded in NIBRS. The proportion of assaults and robberies committed with a firearm measured in both sources did not differ. If the additional gun violence events recorded in the NIBRS sample are consistent with national crime reporting, the number of additional gun violence events per year captured using NIBRS totals approximately 65,071 additional events, or an additional 178 gun violence events per day. Of the additional gun violence events, approximately 31% are due to omitted crime categories, with the remaining variation driven mostly by aggravated assaults with a firearm. Conclusions: Police data are important data sources for estimating the full scope of gun violence. Comparisons between police data sources suggest that the proportion of crimes committed with a firearm is unchanged. Due to crime reporting conventions, however, the number of gun violence events may be substantially understated. Despite advantages in measuring gun violence, agency participation in NIBRS is alarmingly low and jeopardizes accurate and reliable national crime data. [ABSTRACT FROM AUTHOR]

A plethora of research has been conducted on physical activity (PA) during the school day as part of a CSPAP. Classroom activity, recess, and other school day opportunities such as active transitions, school-wide movement breaks, and drop-ins provide valuable opportunities for students to reach recommended levels of PA. In addition to the health benefits from engaging in PA during this time and decreasing bouts of sedentary behavior, positive outcomes have been demonstrated in terms of students' academic performance and social/emotional health. The purpose of this paper is to provide an overview of research conducted on PA during the school day over the past decade and offer suggestions to practitioners on efficient and effective ways to incorporate PA during school. Based on the collective efforts of researchers, we summarize the outcomes and provide the biggest "return on investment" for physical educators, classroom teachers, and PA professionals who are most likely to implement PA during the school day as part of a CSPAP. [ABSTRACT FROM AUTHOR]

Measuring and forecasting migration patterns has important implications for understanding broader population trends, for designing policy effectively and for allocating resources. However, data on migration and mobility are often lacking, and those that do exist are not available in a timely manner. Social media data offer new opportunities to provide more up-to-date demographic estimates and to complement more traditional data sources. Facebook's Advertising Platform, for example, is a potentially rich data source of demographic information that is regularly updated. However, Facebook's users are not representative of the underlying population. This paper proposes a statistical framework to combine social media data with traditional survey data to produce timely 'nowcasts' of migrant stocks by state in the United States. The model incorporates bias adjustment of Facebook data, and a pooled principal component time series approach, to account for correlations across age, time and space. We use the model to estimate and project migrants from Mexico, India and Germany, three migrant groups with varying levels and trends of migration in the US. By comparing short-term projections with data from the American Community Survey, we show that the model predictions outperform alternatives that rely solely on either social media or survey data. [ABSTRACT FROM AUTHOR]

Retrospective review. This bibliometric review summarizes the publication trends and critical information about the most cited Proximal Junction Kyphosis (PJK) articles. Data: Proximal junctional kyphosis is frequently diagnosed after spinal fusion surgery. However, there continues to be heavy debate regarding the definition, incidence, risk factors, and treatment of this disorder. Nine hundred eleven articles were found when searching The Web of Science database with the keywords "Proximal junctional kyphosis" and "proximal junctional failure." The 200 top-cited articles were reviewed and screened to ensure PJK was discussed. The articles were filtered based on the highest to lowest number of citations, and the top 50 articles were chosen. Inclusion criteria included articles that contained a discussion of PJK and outcomes after surgery. Exclusion criteria included articles without mentioning PJK, or that studied non-human subjects. The 50 most cited articles were sorted by level of evidence and their classification for analysis. The 50 most cited articles in this study were published a total of 6056 times. These articles were cited 71–413 times in the literature, with publications from 1994 to 2018. Most of the top 50 articles (64%) were published in the USA. Specifically, HSS and Washington University are the institutions with the most contributions to the publication of the most cited articles on PJK (n = 16). Lenke was the author that contributed to most publications in the top 50 articles on PJK. This study provides a framework for the most cited articles published on PJK. Most articles on this topic were in the category of clinical outcomes (36%) and were of a level of evidence III (46%). Most of the top-cited articles came from the journal Spine (68%) and were published in the USA (64%). These top-cited papers are essential to understanding this critical trending topic in spine surgery. III. [ABSTRACT FROM AUTHOR]

In recent decades, there has been an increase in people learning about and practicing beekeeping in rural, peri-urban and urban across the United States. Yet, much recent honey bee research focuses on the biotic (e.g., mites and viruses) and abiotic (e.g., pesticides and management practices) factors contributing to colony loss. However, beekeepers themselves play an essential role in stewarding healthy and productive colonies. This study focuses on backyard and sideliner beekeepers who responded to an annual online survey distributed in the U.S. (n = 2155) in 2018. This paper investigates beekeepers' concerns, and their use and perception of honey bee management information sources. We found survey respondents to be a relatively homogeneous group. Our findings suggest beekeepers' primary concerns relate to biotic and abiotic drivers of colony loss and the socio-political aspects of honey bee management. Also, beekeepers use, perceive as useful, and trust different types of information in consistent ways. For example, networks developed in beekeeping club interactions with beekeeping scientists are often used, viewed as useful, and highly trusted. Thus, information distribution through such channels may increase the likelihood of impactful and resonant communication exchanges among researchers, educators, and beekeepers, perhaps leading to the more widespread use of Best Management Practices that address risk factors to mitigate future colony loss. • Beekeepers are concerned about Varroa, general disease, and pesticide exposure. • Personal experience, mentors, and clubs are perceived as useful information sources. • Scientists, experience, and mentors are perceived as trustworthy information sources. • Clubs and mentor programs can be resonant sites for information sharing and practice. [ABSTRACT FROM AUTHOR]

Pasteurised donor human milk is recommended for very low birthweight infants who do not have access to their mother's milk. Although the use of donor milk continues to increase, little is known about the donation experiences of milk bank donors. We aimed to describe and compare enablers, barriers and patterns of human milk donation and identify factors predicting donation volume in a convenience sample of approved milk bank donors in the United Kingdom and the United States. A cross‐sectional online survey was conducted from August 2022 to December 2022. Approved milk bank donors (n = 556) from three milk banks in the United States (n = 369, Mothers' Milk Bank of Florida, Mother's Milk Bank of North Texas and Northwest Mothers Milk Bank) and one milk bank in the United Kingdom (n = 187, Hearts Milk Bank) completed the survey. A substantial portion of donors in both settings reported participating in other forms of milk exchange (51% of U.S. donors vs. 39% of UK donors, p = 0.009). Top donation barriers reported in both settings were completing the serological screening and having enough space to store collected milk. Most donors started donating when their infant was 3 months old or older and reported donating mature milk. The most common source of information related to milk banking in each setting was the internet (United Kingdom–70% vs. United States ‐ 63%, p = 0.112). Variables that predicted lifetime donation volume differed between the United States and the United Kingdom, highlighting the importance of setting‐specific milk banking research. Key messages: Milk bank donors in the United Kingdom and the United States reported primarily receiving milk banking information from the internet and not their health care provider.A substantial portion of human milk bank donors in the United Kingdom and the United States participate in other forms of milk exchange, including sharing with a peer.Participating in other forms of milk exchange did not predict lower milk bank donation volumes.Barriers to donation and predictors of donation volume differed between donors in the United Kingdom and the United States, suggesting setting‐specific research is warranted to improve the donation process globally. [ABSTRACT FROM AUTHOR]

In this regular feature, aesthetic nurse Claudia McGloin presents a brief synopsis of a range of recently published articles on medical aesthetics. Research roundup aims to provide an overview, rather than a detailed summary and critique, of the papers selected. Should you wish to look at any of the papers in more detail, a full reference is provided at the end of each study summary [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to evaluate the use of after‐visit instructions (AVIs) in an academic rheumatology clinic and assess the impact of standardized AVIs (sAVIs) and teach‐back (TB) on comprehension of health information. Methods: A retrospective review of adult patients seen between October 1 and 8, 2021, at the rheumatology clinic collected data on patient demographics, clinical features, and the presence, content, and readability of AVIs. During a subsequent prospective proof‐of‐concept study, routinely scheduled patients seen at the rheumatology clinic were randomized into three groups: control (received standard of care), received sAVIs only, and received sAVIs plus TB. Patients completed a health literacy questionnaire, satisfaction survey, and a one‐ to two‐week postvisit telephone survey to assess AVI comprehension. Results: Out of 316 retrospective patient visits, 82 (25.9%) received AVIs. Among 210 of 316 patients (66.5%) with management changes, 76 (36.1%) received AVI, with 74.2% of the instructions considered concordant with the provider's note. Use of AVIs was higher with management changes, new patient visits, and medical trainee/teaching clinics. AVIs were written at a median 6.8 grade level. A total of 75 patients completed the prospective study: 31 (41.3%) were in the control group, 19 (25.3%) were in the group that received sAVIs only, and 25 (33.3%) were in the group that received AVIs with TB. There were no differences in overall postvisit survey comprehension/retention scores among the three patient groups evaluated. Conclusion: Although a lack of AVI use was identified, implementation of sAVIs did not appear to impact patient retention or comprehension of discharge health information. [ABSTRACT FROM AUTHOR]

Background: Engaging patients and community members in healthcare implementation, research and evaluation has become more popular over the past two decades. Despite the growing interest in patient engagement, there is scant evidence of its impact and importance. Boot Camp Translation (BCT) is one evidence-based method of engaging communities in research. The purpose of this report is to describe the uptake by primary care practices of cardiovascular disease prevention materials produced through four different local community engagement efforts using BCT. Methods: EvidenceNOW Southwest (ENSW) was a randomized trial to increase cardiovascular disease (CVD) prevention in primary care practices. Because of its study design, Four BCTs were conducted, and the materials created were made available to participating practices in the "enhanced" study arm. As a result, ENSW offered one of the first opportunities to explore the impact of the BCT method by describing the uptake by primary care practices of health messages and materials created locally using the BCT process. Analysis compared uptake of locally translated BCT products vs. all other products among practices based on geography, type of practice, and local BCT. Results: Within the enhanced arm of the study that included BCT, 69 urban and 13 rural practices participated with 9 being federally qualified community health centers, 14 hospital owned and 59 clinician owned. Sixty-three practices had 5 or fewer clinicians. Two hundred and ten separate orders for materials were placed by 43 of the 82 practices. While practices ordered a wide variety of BCT products, they were more likely to order materials developed by their local BCT. Conclusions: In this study, patients and community members generated common and unique messages and materials for cardiovascular disease prevention relevant to their regional and community culture. Primary care practices preferred the materials created in their region. The greater uptake of locally created materials over non-local materials supports the use of patient engagement methods such as BCT to increase the implementation and delivery of guideline-based care. Yes, patient and community engagement matters. Trial registration and IRB: Trial registration was prospectively registered on July 31, 2015 at ClinicalTrials.gov (NCT02515578, protocol identifier 15–0403). The project was approved by the Colorado Multiple Institutional Review Board and the University of New Mexico Human Research Protections Office. [ABSTRACT FROM AUTHOR]

Indian Americans now constitute the nation's second largest foreign-born population group in the United States (U.S.). Concerning Indian American youth, there is a paucity of information about their experiences in the U.S., particularly with respect to cultural stress and model minority stress, and whether these stressors have an impact on their mental health. This article describes the dual experiences of Indian American youth in the Indian and American cultures and discusses two theoretical frameworks (cultural stress and model minority stress) that illuminate dynamics influencing the lives of these youth. We illustrate three core pathways (independent, synergistic and indirect) by which cultural stress and model minority stress can influence the mental health of Indian American youth. Social workers and other behavioral health providers can assist Indian American youth by examining their own biases related to the model minority stereotype, helping school personnel assess the impact of this stereotype, and remembering that Indian American youth are not a monolith. Researchers need to disaggregate data on Asian Americans to gather accurate statistics on the Indian American population and refine model-minority-stereotype assessment instruments. [ABSTRACT FROM AUTHOR]

This article introduces the 2023 National Offshore Wind data set (NOW-23), which offers the latest wind resource information for offshore regions in the United States. NOW-23 supersedes, for its offshore component, the Wind Integration National Dataset (WIND) Toolkit, which was published a decade ago and is currently a primary resource for wind resource assessments and grid integration studies in the contiguous United States. By incorporating advancements in the Weather Research and Forecasting (WRF) model, NOW-23 delivers an updated and cutting-edge product to stakeholders. In this article, we present the new data set which underwent regional tuning and performance validation against available observations and has data available from 2000 through, depending on the region, 2019–2022. We also provide a summary of the uncertainty quantification in NOW-23, along with NOW-WAKES, a 1-year post-construction data set that quantifies expected offshore wake effects in the US Mid-Atlantic lease areas. Stakeholders can access the NOW-23 data set at https://doi.org/10.25984/1821404. [ABSTRACT FROM AUTHOR]

Assessing and improving the effectiveness of evacuation orders is critical to improving hurricane emergency response, particularly as the frequency of hurricanes increases in the United States. However, our understanding of causal relationships between evacuation orders and evacuation decision-making is still limited, in large part due to the lack of standardized, high-temporal-resolution data on historical evacuation orders. To overcome this gap, we developed the Hurricane Evacuation Order Database (HEvOD) – a comprehensive database of hurricane evacuation orders issued in the United States between 2014 and 2022. The database features evacuation orders that were systematically retrieved and compiled from a wide range of resources and includes information on order type, announcement time, effective time, and evacuation area. The rich collection of attributes and the resolution of the data in the database will allow researchers to systematically investigate the impact of evacuation orders, as a vital public policy instrument, and can serve as an important resource to identify gaps in current policies, leading to more effective policy design in response to hurricanes. [ABSTRACT FROM AUTHOR]

Purpose: Family--professional partnerships are important for youth learning to use aided augmentative and alternative communication (AAC). This study examined the family-oriented beliefs and practices of speech-language pathologists (SLPs) working with preschool and school-aged children learning to use aided AAC (aged 3--21 years), specifically during the COVID-19 pandemic. Method: Participants were 25 SLPs who participated in an individual semistructured interview. Qualitative analysis was used to identify and describe groups of SLPs based on commonalities and differences in their beliefs and practices working with families. The characteristics of SLPs in each group was also explored descriptively (e.g., race/ethnicity, work setting, caseload). Results: SLPs clustered into three groups based on their beliefs and practices: (a) professionally centered, (b) family-allied, and (c) family-focused. SLPs varied across these groups in how they planned services, offered training/coaching, communicated, shared resources, offered emotional support, and adapted to and with different families. Conclusions: Findings indicate the need to support greater family-centeredness in AAC services by building on the strengths of SLPs in the field. Promoting strong family--professional partnerships could in turn improve outcomes for students who use AAC. [ABSTRACT FROM AUTHOR]

Criminal legal system involvement (CLI) is a critical social determinant of health that lies at the intersection of multiple sources of health disparities. The COVID-19 pandemic exacerbates many of these disparities, and specific vulnerabilities faced by the CLI population. This study investigated the prevalence of COVID-19-related misinformation, as well as its relationship with COVID-19 information sources used among Americans experiencing CLI. A nationally representative sample of American adults aged 18+ (N = 1,161), including a subsample of CLI individuals (n = 168), were surveyed in February-March 2021. On a 10-item test, CLI participants endorsed a greater number of misinformation statements (M = 1.88 vs. 1.27) than non-CLI participants, p <.001. CLI participants reported less use of government and scientific sources (p =.017) and less use of personal sources (p =.003) for COVID-19 information than non-CLI participants. Poisson models showed that use of government and scientific sources was negatively associated with misinformation endorsement for non-CLI participants (IRR =.841, p <.001), but not for CLI participants (IRR =.957, p =.619). These findings suggest that building and leveraging trust in important information sources are critical to the containment and mitigation of COVID-19-related misinformation in the CLI population. [ABSTRACT FROM AUTHOR]

Objectives. To describe breastfeeding initiation and breastfeeding at 1, 2, and 3 months, and information sources on breastfeeding among women with a recent live birth by disability status. Methods. We analyzed October 2018 to December 2020 data from the Pregnancy Risk Assessment Monitoring System for 24 sites in the United States that included the Washington Group Short Set of Questions on Disability (seeing, hearing, walking or climbing stairs, remembering or concentrating, self-care, communicating). We defined disability as reporting "a lot of difficulty" or "cannot do this at all" on any of these questions. Results. Among 39 673 respondents, 6.0% reported disability. In adjusted analyses, breastfeeding was lower among respondents with disability at 2 (62.6% vs 66.6%; adjusted prevalence ratio [APR] = 0.94; 95% confidence interval [CI] = 0.89, 0.99) and 3 months (54.7% vs 59.6%; APR = 0.92; 95% CI = 0.86, 0.98) than those without disability. Respondents with disability were less likely to receive information from health care providers or support professionals (89.3% vs 92.3%), but as likely from breastfeeding or lactation specialists (78.1% vs 75.3%). Conclusions. Strategies to ensure women with disability, receive breastfeeding support, including breastfeeding information, could improve breastfeeding outcomes. (Am J Public Health. 2024;114(1):108–117. https://doi.org/10.2105/AJPH.2023.307438) [ABSTRACT FROM AUTHOR]

Distrust and partisan identity are theorized to undermine health communications. We examined the role of these factors on the efficacy of discussion groups intended to promote vaccine uptake. We analyzed survey data from unvaccinated Facebook users (N = 371) living in the US between January and April 2022. Participants were randomly assigned to Facebook discussion groups (intervention) or referred to Facebook's COVID-19 Information Center (control). We used Analysis of Covariance to test if the intervention was more effective at changing vaccination intentions and beliefs compared to the control in subgroups based on participants' partisan identity, political views, and information trust views. We found a significant interaction between the intervention and trust in public health institutions (PHIs) for improving intentions to vaccinate (P =.04), intentions to encourage others to vaccinate (P =.03), and vaccine confidence beliefs (P =.01). Among participants who trusted PHIs, those in the intervention had higher posttest intentions to vaccinate (P =.008) and intentions to encourage others to vaccinate (P =.002) compared to the control. Among non-conservatives, participants in the intervention had higher posttest intentions to vaccinate (P =.048). The intervention was more effective at improving intentions to encourage others to vaccinate within the subgroups of Republicans (P =.03), conservatives (P =.02), and participants who distrusted government (P =.02). Facebook discussion groups were more effective for people who trusted PHIs and non-conservatives. Health communicators may need to segment health messaging and develop strategies around trust views. [ABSTRACT FROM AUTHOR]

This study analyzed the effects of the announcement and publication of the 2019 Public Charge Rule on participation of the special supplemental nutrition program for women, infants, and children (WIC) among pregnant immigrants. A difference-in-differences approach was used to analyze the changes in prenatal WIC participation before and after the 2019 Public Charge Rule announcement and publication among immigrants relative to US natives. We identified 17,623,683 live singletons born in a hospital from 2015 to 2019. Compared to US natives, the odds of prenatal WIC participation among immigrants were 11.4% lower after the 2019 Public Charge Rule announcement, and 19% lower after the final rule was published. The results of this study suggest that pregnant immigrants may decide not to participate in the WIC program due to the fear of jeopardizing their immigration status after the announcement and publication of the 2019 Public Charge Rule. [ABSTRACT FROM AUTHOR]

BACKGROUND: The International Agency for Research on Cancer (IARC) Monographs program assembles expert working groups who publish a critical review and evaluation of data on agents of interest. These comprehensive reviews provide a unique opportunity to identify research needs to address classification uncertainties. A multidisciplinary expert review and workshop held in 2009 identified research gaps and needs for 20 priority occupational chemicals, metals, dusts, and physical agents, with the goal of stimulating advances in epidemiological studies of cancer and carcinogen mechanisms. Overarching issues were also described. OBJECTIVES: In this commentary we review the current status of the evidence for the 20 priority agents identified in 2009. We examine whether identified Research Recommendations for each agent were addressed and their potential impact on resolving classification uncertainties. METHODS: We reviewed the IARC classifications of each of the 20 priority agents and identified major new epidemiological and human mechanistic studies published since the last evaluation. Information sources were either the published Monograph for agents that have been reevaluated or, for agents not yet reevaluated, Advisory Group reports and literature searches. Findings are described in view of recent methodological developments in Monographs evidence evaluation processes. DISCUSSION: The majority of the 20 priority agents were reevaluated by IARC since 2009. The overall carcinogen classifications of 9 agents advanced, and new cancer sites with either “sufficient” or “limited” evidence of carcinogenicity were also identified for 9 agents. Examination of published findings revealed whether evidence gaps and Research Recommendations have been addressed and highlighted remaining uncertainties. During the past decade, new research addressed a range of the 2009 recommendations and supported updated classifications for priority agents. This supports future efforts to systematically apply findings of Monograph reviews to identify research gaps and priorities relevant to evaluation criteria established in the updated IARC Monograph Preamble. [ABSTRACT FROM AUTHOR]

What were the impacts of the Covid‐19 pandemic on trust in public health information, and what can be done to rebuild trust in public health authorities? This essay synthesizes insights from science and technology studies, information studies, and bioethics to explore sociotechnical factors that may have contributed to the breakdown of trust in public health information during the Covid‐19 pandemic. The field of science and technology studies lays out the dynamic nature of facts, helping to explain rapid shifts in public health messaging during Covid‐19 and reasons they produced a lack of trust in public health authorities. The information field looks at how facts are sociotechnically constructed through systems of classification, illustrating how extrascientific factors influence public health authorities. Putting these perspectives alongside bioethics principles raises additional factors to consider. The goal of this essay is to learn from past failures to point toward a brighter future where trust in public health authorities can be rebuilt, not on faith, but rather through striving for calibrated trust within which, through a virtuous circle, trust is validated. [ABSTRACT FROM AUTHOR]

Objective: To assess use of mammography information systems (MISs) and explore features associated with breast imaging radiologist satisfaction. Methods: A 22-question survey regarding MISs was distributed electronically to the Society of Breast Imaging membership between February 16, 2022 and June 28, 2022. Differences in responses between respondents satisfied and dissatisfied with their MIS were analyzed using Pearson chi-squared test, Fisher exact test, and multivariate logistic regression. Results: The response rate was 11.4% (228/2007). Most respondents used a commercial MIS (195/228, 85.5%). Most used were Epic (47/228, 21%), MagView (47/228, 21%), and PenRad (37/228, 16%). Only 4.4% (10/228) reported that patient tracking was not integrated with results reporting. The majority (129/226, 57%) reported satisfaction with their MIS. Satisfaction correlated (P < 0.05) with features such as picture archiving and communication system integration, structured reporting, access to physician outcomes metrics, and ability to query data. Less commonly reported features such as non-English language options and recognition of laterality and patient mismatch errors also correlated with satisfaction. Lack of these features correlated with dissatisfaction (P < 0.05). Satisfaction also correlated with adequate training (P < 0.001) and technology support (P < 0.001). On multivariate analysis, longer time using the current MIS was independently associated with satisfaction. Conclusion: Most respondents used a commercial MIS and were satisfied with their system. Satisfied users reported several helpful MIS features and adequate training and support. The survey results could help MIS companies when designing new products and inform radiologists and administrators when considering a new MIS. [ABSTRACT FROM AUTHOR]

Numerous countries have recognized the need for improved surveillance data on the health of persons with intellectual and developmental disabilities (IDD). Federal agencies need additional information about the prevalence and health of persons with IDD to guide decisions about policies and programs. Without such data, health inequities and health needs of people with IDD can go unrecognized and be ignored, and resources may be misdirected. The priority areas for needed information, however, have not been well documented. To determine priorities for health data for persons with IDD, we conducted focus groups with three types of stakeholders from around the United States: researchers/practitioners, adults with IDD, and family members. Focus group dialogue was coded for themes and compared across stakeholder categories. Themes common to all groups included valuing people with IDD and respecting their self‐determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social, and sexual health; and access to quality health care, medications, and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID‐19. Findings have implications for establishing a health surveillance data system and for practice more generally. Health needs to be considered holistically, including physical, mental, social, and sexual health. A data framework needs to extend beyond a cross‐sectional comparative framework to include longitudinal tracking and monitoring conditions unique to persons with IDD. People with IDD may not trust nor disclose sensitive information about their disability and health to support persons and surveyors, which has implications for under‐reporting of prevalence of IDD and validity of proxy‐reporting. Input from multiple stakeholders is fundamental to developing a usable and relevant data collection system. [ABSTRACT FROM AUTHOR]

Background: The decision about which type of general anesthetic to administer is typically made by the clinical team without patient engagement. This study examined patients' preferences, experiences, attitudes, beliefs, perceptions, and perceived social norms about anesthesia and about engaging in the decision regarding general anesthetic choice with their clinician. Methods: We conducted a survey in the United States, sent to a panel of surgical patients through Qualtrics (Qualtrics, Provo, UT) from March 2022 through May 2022. Questions were developed based on the Theory of Planned Behavior and validated measures were used when available. A patient partner who had experienced both intravenous and inhaled anesthesia contributed to the development and refinement of the questions. Results: A total of 806 patients who received general anesthesia for an elective procedure in the last five years completed the survey. 43% of respondents preferred a patient-led decision making role and 28% preferred to share decision making with their clinical team, yet only 7.8% reported being engaged in full shared decision making about the anesthesia they received. Intraoperative awareness, pain, nausea, vomiting and quickly returning to work and usual household activities were important to respondents. Waking up in the middle of surgery was the most commonly reported concern, despite this experience being reported only 8% of the time. Most patients (65%) who searched for information about general anesthesia noted that it took a lot of effort to find the information, and 53% agreed to feeling frustrated during the search. Conclusions: Most patients prefer a patient-led or shared decision making process when it comes to their anesthetic care and want to be engaged in the decision. However, only a small percentage of patients reported being fully engaged in the decision. Further studies should inform future shared decision-making tools, informed consent materials, educational materials and framing of anesthetic choices for patients so that they are able to make a choice regarding the anesthetic they receive. [ABSTRACT FROM AUTHOR]

BACKGROUND: Increasingly, marginalized communities are disproportionately facing the worsening effects of environmental hazards, including air pollution, water pollution, and climate change. Language isolation and accessibility has been understudied as a determinant of health. Spanish, despite being the second-most common language in the United States with some 41.8 million speakers, has been neglected among environmental health scientists. Building capacity in high-quality Spanish-language science communication, both for scientific and nonscientific audiences, can yield improvements in health disparities research, public health literacy, international collaborations, and diversity and inclusion efforts. OBJECTIVES: In this article, we discuss the context of language diversity in environmental health sciences and offer recommendations for improving science communication in Spanish. DISCUSSION: English is currently the predominant language for scientific discourse, but Spanish and other non-English languages are routinely used by many environmental health science students and professionals, as well as much of the public. To more effectively conduct and communicate environmental health work in Spanish, we suggest that researchers and scientific institutions a) foster structural changes, b) train emerging scholars and support established researchers, c) tap into community ways of knowing, and d) leverage emerging technologies. [ABSTRACT FROM AUTHOR]

Background: There is a wide range of literature on patellar tendon injury, making it increasingly difficult to stay informed on the most influential studies in this field. It is essential to be familiar with the foundational articles of patellar tendon injury research to understand the current state of the literature and deliver high quality care. Purpose: To objectively identify the 50 most influential articles relating to patellar tendon injury and conduct a bibliometric analysis to identify key features of these articles. Study Design: Cross-sectional study. Methods: The Clarivate Analytics Web of Knowledge database was utilized to gather metrics on the 50 most cited articles on patellar tendon injury on June 27, 2022. The information extracted from each article included publication year, number of citations, author information, article type, level of evidence, country of origin, journal name, study focus, and industry influence. Results: The top 50 studies were cited a total of 8543 times and published between 1977 and 2015. The majority of articles were published after 2003, and the majority of citations were accrued after 2011. The most prevalent article types were cohort studies (n = 23), and the majority of studies were of evidence level 2 (n = 14) or 4 (n = 13). Australia and the United States (US) each published the most studies (n = 11). Only 4 (8%) studies focused on patellar tendon rupture, and 12 (24%) of the top 50 studies were associated with industry. Conclusion: The majority of the top 50 most influential articles in patellar tendon injury were published and accumulated citations in the past 10 to 20 years. Non-US countries, institutions, and journals published many of the top 50 studies, reflecting a global interest and commitment to research in this field. Patellar tendon rupture and surgical repair represents a minority of research in the top 50 studies and could be a point of growth in the future. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this study was to describe and explore the lived experience of Chinese medical tourists receiving cancer care in clinical settings in the United States. Design: A qualitative phenomenological design. Methods: In this study, Hermeneutic phenomenology was used to interview 11 participants on WeChat, a popular social media platform of China. Hermeneutic phenomenology methods and hermeneutic circles were used to analyse data. Results: Five themes identified were: the application process involves various challenges; overcoming transportation and language barriers; feeling content with healthcare received in the United States; nearly perfect experience, except for long waiting times; and high cost of being a medical tourist. Conclusion: Despite the cost and complexity of cancer treatment, Chinese medical tourists valued their experience in US clinical settings. Although, they experienced real challenges, they overcame obstacles with self‐determination and varied resources. Therefore, culturally appropriate healthcare is highly recommended. Relevance to clinical practice: The findings of this study are relevant for clinical practice, particularly cancer care to medical tourists in the United States. To better support the Chinese medical tourists with cancer, various strategies and techniques, as reported in this study, could be helpful. It is highly recommended to provide healthcare providers to enable them to understand and respect the diversity norms of other cultures. [ABSTRACT FROM AUTHOR]

Objective: We sought to identify trends and themes in how academic health sciences libraries in the United States, Canada, and Mexico have supported engagement and outreach with Native Americans, Alaska Natives, First Nations, and Indigenous peoples, in or from those same countries. We also sought to learn and share effective practices for libraries engaging with these communities. Methods: We conducted a scoping review utilizing Arksey and O'Malley's framework for scoping reviews and followed principles from JBI Manual for Evidence Synthesis. We searched seven bibliographic databases, E-LIS (Eprints in Library and Information Science repository), and multiple sources of grey literature. Results were screened using Covidence and Google Sheets. We reported our review according to the PRISMA and PRISMA-S guidelines. We determined types of interventions used by academic health sciences libraries in engagement with our included populations, the level of public participation reached by these interventions, what partnerships were established, and what practices emerged. Results: Database searching returned 2,020 unique results. Additional searching resulted in 211 further unique results. Full text screening of relevant articles found 65 reports meeting criteria for inclusion. Data extraction was conducted on these programs to identify partners, intervention type, and evaluation method. The programs were categorized using the IAP2 Spectrum of Public Participation. Conclusion: Our scoping review found that many programs were health information trainings and did not move beyond informing the public with little further involvement. The need for sustained funding, greater community participation and more publishing on engagement and outreach are discussed. [ABSTRACT FROM AUTHOR]

Background: Understanding concordance between informants' and cognitively impaired participants' information reporting is crucial for Alzheimer's and Alzheimer's-related dementia studies. Methods: The Brain Attack Surveillance in Corpus Christi-Cognitive is a community-based cohort study. Households in Nueces County, Texas, USA, were randomly identified. 330 dyads of participants and their named informants answered questions. Models were generated to examine which predictors, including age, gender, ethnicity, cognitive function, and relationship to informant, influenced answer discordance. Results: For demographic items, female participants and participants with spouses/partners as informants had significantly less discordance, with incidence rate rations (IRRs) of 0.65 (CI = 0.44, 0.96) and 0.41 (CI = 0.23, 0.75), respectively. For health items, better cognitive function of the participant was associated with less discordance, with an IRR of 0.85 (CI = 0.76, 0.94). Conclusions: Demographic information concordance is most associated with gender and informant–participant relationship. Level of cognitive function is most associated with concordance for health information. ClinicalTrials.gov identifier NCT03403257. [ABSTRACT FROM AUTHOR]

Background: Familial hypercholesterolemia (FH) is an inherited disease which causes premature atherosclerotic cardiovascular disease. However, less than 10% of individuals with FH have been identified. Objective: To assess parental perspectives for inclusion of FH on routine newborn screening (NBS) and to highlight potential benefits, harms, and ethical concerns. Methods: Telephone interviews of two groups were conducted: 1) parents of children diagnosed with FH, and 2) parents of children diagnosed with a genetic condition through NBS. Stratified purposive sampling was used to ensure adequate representation. The 11 telephone interviews were conducted in 30-min sessions guided by a semi-structured interview script. At the beginning of the interview, participants were educated on the NBS process and FH. The interviews were transcribed verbatim, and a thematic analysis was performed in multiple steps. Results: All interviewees indicated that they would be interested in having their child be screened for FH on the newborn screen. Reasons supporting screening during the newborn period included knowing their child's diagnosis, the ability to screen family members for FH, incorporation of lifestyle changes, and access to preventive care. Negatives surrounding screening during the newborn period included increased stress or anxiety, knowledge, stigma, and the delay from diagnosis to initiation of pharmacotherapy for FH. Conclusion: While these interviewees were in favor of NBS for FH, further education of parents and clinicians is needed to ensure proper implementation. The results of this study may be useful to formulate family notification and care protocols for newborns diagnosed with FH and other diseases. Significance: What is already known on this subject? Familial hypercholesterolemia is a common inherited disorder that predisposes to early cardiovascular disease, but most affected individuals are not diagnosed. Childhood cholesterol screening is an effective but underutilized diagnostic tool. Previous studies report parents find childhood cholesterol screening acceptable, but it is not known if screening newborns would also be acceptable. What does this study add? Interviewees found screening newborns for familial hypercholesterolemia acceptable and would agree to screen their own newborn. The ability to screen other family members and access to early treatment were important factors in their decision to screen. Education of clinicians about familial hypercholesterolemia was an important concern raised by interviewees. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has dramatically affected pregnant people's prenatal care, labor, and delivery experiences. Given these rapid changes, providers have needed to be proactive in sharing information about COVID‐19‐related care impacts. The purpose of this study was to investigate: (a) Whether patient demographics or disrupted care (eg, canceled appointments and rapid shift to telehealth) is associated with patient‐reported information sharing from the providers; and (b) Whether patient‐reported provider information sharing or disruptions to care are associated with patient satisfaction with provider. Methods: Data come from a convenience sample of 1999 pregnant people living in the United States who completed an online survey between April 16 and May 7 2020. Results: Thirty‐eight percent of participants said that their provider had not discussed how the pandemic would affect their care during pregnancy, labor, or delivery. Participants with lower education, less income, or whose appointments had been canceled or rescheduled because of the pandemic were significantly less likely to report information sharing. Provider satisfaction was significantly lower among participants who did not report information sharing, those who had appointments by way of telehealth, and those who reported that all their appointments had been rescheduled/canceled. Discussion: At the beginning of the pandemic, there were significant socioeconomic inequities in reported information sharing by the providers, which in turn was negatively associated with provider satisfaction. Providers need to be aware of the role implicit bias may play in information sharing—both generally and during public health crises—and consider ways to reduce the impacts of disrupted care delivery on patient satisfaction. If left unaddressed, perceived poor provider communication and associated low satisfaction with providers could contribute to adverse perinatal outcomes. [ABSTRACT FROM AUTHOR]