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

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

Should Researchers Destroy Audio or Video Recordings?

It is a common practice in qualitative research to transcribe audio or video files from interviews or focus groups and then destroy the files at some future time, usually after validating the transcript or concluding the research. We argue that it is time to rethink this practice and that retention of original qualitative data-including audio and video recordings-should be the default stance in most cases.

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

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

An Overarching Framework for the Ethics of Artificial Intelligence in Pediatrics.

This Viewpoint discusses the use of artificial intelligence in pediatrics.

Engaging Adolescents in Using Online Patient Portals.

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

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

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

Fairness and COVID: Conducting research during the crisis.

The COVID-19 pandemic forced Principal Investigators (PIs) to make rapid and unprecedented decisions about ongoing research projects and research teams. Confronted with vague or shifting guidance from institutional administrators and public health officials, PIs nonetheless had to decide whether their projects were "essential," who could conduct on-site "essential" research, how to continue research activities by remote means if possible, and how to safely and effectively manage personnel during the crisis. Based on both narrative comments from a federally sponsored survey of over a thousand NIH- and NSF-funded PIs and their personnel, as well as follow-up interviews with over 60 survey participants, this study examines various ways PI and institutional decisions raised issues of procedural and distributive fairness. These fairness issues include the challenge of treating research personnel fairly in light of their disparate personal circumstances and inconsistent enforcement of COVID-19-related directives. Our findings highlight aspects of fairness and equitability that all PIs and research administrators should keep in mind for when future research disruptions occur.

Principal Investigators' Priorities and Perceived Barriers and Facilitators When Making Decisions About Conducting Essential Research in the COVID-19 Pandemic.

At the onset of the COVID-19 pandemic in the United States, stay-at-home orders disrupted normal research operations. Principal investigators (PIs) had to make decisions about conducting and staffing essential research under unprecedented, rapidly changing conditions. These decisions also had to be made amid other substantial work and life stressors, like pressures to be productive and staying healthy. Using survey methods, we asked PIs funded by the National Institutes of Health and the National Science Foundation (N = 930) to rate how they prioritized different considerations, such as personal risks, risks to research personnel, and career consequences, when making decisions. They also reported how difficult they found these choices and associated symptoms of stress. Using a checklist, PIs indicated those factors in their research environments that made their decisions easier (i.e., facilitators) or more difficult (i.e., barriers) to make. Finally, PIs also indicated how satisfied they were with their decisions and management of research during the disruption. Descriptive statistics summarize PIs' responses and inferential tests explore whether responses varied by academic rank or gender. PIs overall reported prioritizing the well-being and perspectives of research personnel, and they perceived more facilitators than barriers. Early-career faculty, however, rated concerns about their careers and productivity as higher priorities compared to their senior counterparts. Early-career faculty also perceived greater difficulty and stress, more barriers, fewer facilitators, and had less satisfaction with their decisions. Women rated several interpersonal concerns about their research personnel more highly than men and reported greater stress. The experience and perceptions of researchers during the COVID-19 pandemic can inform policies and practices when planning for future crises and recovering from the pandemic.

Addressing serious and continuing research noncompliance and integrity violations through action plans: Interviews with institutional officials.

Serious and continuing research noncompliance and integrity violations undermine the quality of research and trust in science. When researchers engage in these behaviors, institutional officials (IOs) often develop corrective action plans. Ideally, such plans address the root causes so noncompliance or research integrity violations discontinue. The aim of this study was to identify what IOs perceive as causes and action plan activities typically prescribed. We conducted semi-structured in-depth interviews with 47 IOs at research institutions across the U.S. including: institutional review board and institutional animal care and use committee chairs and directors, chief research officers, research compliance and integrity officers, and institutional conflicts of interest chairs and directors. The most common root causes identified were: 1) lack of knowledge or training, 2) failure to provide research team supervision, and 3) researcher attitudes toward compliance. The most common action plan activities include: 1) retraining in compliance or research integrity, 2) follow-up and hands-on involvement with the researcher, and 3) mandated oversight or mentoring. Because the most commonly identified action plan activities fail to adequately address the majority of root causes, our findings suggest a need for IOs to rethink existing approaches to action plan development to more effectively target root causes.

Enabling Hotspot Detection and Public Health Response to the COVID-19 Pandemic.

INTRODUCTION: Public-facing maps of COVID-19 cases, hospital admissions, and deaths are commonly displayed at the state, county, and zip code levels, and low case counts are suppressed to protect confidentiality. Public health authorities are tasked with case identification, contact tracing, and canvasing for educational purposes during a pandemic. Given limited resources, authorities would benefit from the ability to tailor their efforts to a particular neighborhood or congregate living facility. METHODS: We describe the methods of building a real-time visualization of patients with COVID-19-positive tests, which facilitates timely public health response to the pandemic. We developed an interactive street-level visualization that shows new cases developing over time and resolving after 14 days of infection. Our source data included patient demographics (ie, age, race and ethnicity, and sex), street address of residence, respiratory test results, and date of test. RESULTS: We used colored dots to represent infections. The resulting animation shows where new cases developed in the region and how patterns changed over the course of the pandemic. Users can enlarge specific areas of the map and see street-level detail on residential location of each case and can select from demographic overlays and contour mapping options to see high-level patterns and associations with demographics and chronic disease prevalence as they emerge. CONCLUSIONS: Before the development of this tool, local public health departments in our region did not have a means to map cases of disease to the street level and gain real-time insights into the underlying population where hotspots had developed. For privacy reasons, this tool is password-protected and not available to the public. We expect this tool to prove useful to public health departments as they navigate not only COVID-19 pandemic outcomes but also other public health threats, including chronic diseases and communicable disease outbreaks.

A Novel Innovation and Entrepreneurship (I&E) Training Program for Biomedical Research Trainees.

PROBLEM: Contemporary science emphasizes efficient translation of scientific discoveries into tangible, innovative products and services to improve human health. Therefore, researchers need skills in innovation and entrepreneurship (I&E) to select which problems to address and bring to market the most promising solutions. Training in this skillset is not currently available to most biomedical research trainees. APPROACH: The Entrepreneurship for Biomedicine (E4B) training program was created to develop biomedical researchers' I&E skills. The program comprises 2 semester-length courses: E4B1 teaches core skills; E4B2 focuses on advanced skills for those interested in pursuing funding for a new venture. In addition to traditional entrepreneurship training, E4B teaches ethics and personal skills such as resilience, communication, and team-building. Each course is delivered online and requires about 4 hours weekly. Program elements include short videos for didactic content; a team-based capstone project; mentorship from experienced entrepreneurs; and a live, virtual pitch presentation. The program is housed at Washington University School of Medicine in St. Louis and is open to pre- and postdoctoral biomedical research trainees and faculty nationwide. OUTCOMES: In 2020, 77 trainees completed E4B1 and 13 went on to complete E4B2. Trainees in both courses were satisfied with learning content and mentorship and would recommend the program to a friend. Pre- and postanalyses demonstrated that trainees' confidence in their knowledge about and ability to perform I&E tasks taught throughout the program increased. Since completion, 4 graduates have received external funding for an innovation and 3 have started a company. NEXT STEPS: E4B is well accepted, and this preliminary evaluation suggests the program is effective. It could serve to support medical school curricula, business competitions, and technology transfer efforts, which are opportunities for future exploration. A more robust evaluation is planned and recruitment will be expanded to increase participation from women and underrepresented populations.

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review.

Multiple factors can facilitate or impede the fulfillment of communication functions in pediatric cancer. In this systematic review, we evaluated 109 studies from the preceding 20 years that presented qualitative or quantitative evidence of barriers or facilitators to communication in pediatric cancer. Using a multilevel framework developed in our prior study, we then analyzed and categorized the levels of barriers and facilitators identified in included studies. The vast majority of studies focused on individual-level barriers, rather than team, organization/system, collaborating hospital, community, or policy-level barriers. Future studies should explore the full range of factors that affect communication.

Assessing the climate for research ethics in labs: Development and validation of a brief measure.

The environment researchers work in influences their ethical decisions and behavior. A "climate" for research ethics in a research lab exists when members of the lab perceive that the group values and is committed to principles of research ethics. In this study, we aimed to develop a short, reliable and valid measure assessing perceptions of climate for research ethics at the lab level. The resulting measure, Lab Climate for Research Ethics, was developed using standard scale development guidelines. In a large sample of postdoctoral researchers (N = 570), we found preliminary evidence that the new measure has adequate internal consistency reliability. It was also correlated with an existing measure of climate for research ethics and was not correlated with social desirability, demonstrating evidence of construct validity. The new measure can be used in a variety of contexts, including research administrators seeking information about climate within labs across an institution and researchers who study lab environments.

Exploring perceptions of healthcare technologies enabled by artificial intelligence: an online, scenario-based survey.

BACKGROUND: Healthcare is expected to increasingly integrate technologies enabled by artificial intelligence (AI) into patient care. Understanding perceptions of these tools is essential to successful development and adoption. This exploratory study gauged participants' level of openness, concern, and perceived benefit associated with AI-driven healthcare technologies. We also explored socio-demographic, health-related, and psychosocial correlates of these perceptions. METHODS: We developed a measure depicting six AI-driven technologies that either diagnose, predict, or suggest treatment. We administered the measure via an online survey to adults (N = 936) in the United States using MTurk, a crowdsourcing platform. Participants indicated their level of openness to using the AI technology in the healthcare scenario. Items reflecting potential concerns and benefits associated with each technology accompanied the scenarios. Participants rated the extent that the statements of concerns and benefits influenced their perception of favorability toward the technology. Participants completed measures of socio-demographics, health variables, and psychosocial variables such as trust in the healthcare system and trust in technology. Exploratory and confirmatory factor analyses of the concern and benefit items identified two factors representing overall level of concern and perceived benefit. Descriptive analyses examined levels of openness, concern, and perceived benefit. Correlational analyses explored associations of socio-demographic, health, and psychosocial variables with openness, concern, and benefit scores while multivariable regression models examined these relationships concurrently. RESULTS: Participants were moderately open to AI-driven healthcare technologies (M = 3.1/5.0 ± 0.9), but there was variation depending on the type of application, and the statements of concerns and benefits swayed views. Trust in the healthcare system and trust in technology were the strongest, most consistent correlates of openness, concern, and perceived benefit. Most other socio-demographic, health-related, and psychosocial variables were less strongly, or not, associated, but multivariable models indicated some personality characteristics (e.g., conscientiousness and agreeableness) and socio-demographics (e.g., full-time employment, age, sex, and race) were modestly related to perceptions. CONCLUSIONS: Participants' openness appears tenuous, suggesting early promotion strategies and experiences with novel AI technologies may strongly influence views, especially if implementation of AI technologies increases or undermines trust. The exploratory nature of these findings warrants additional research.

Attitudes toward genomics and precision medicine.

PURPOSE: This paper reports on a novel measure, attitudes toward genomics and precision medicine (AGPM), which evaluates attitudes toward activities such as genetic testing, collecting information on lifestyle, and genome editing - activities necessary to achieve the goals of precision medicine. DISCUSSION: The AGPM will be useful for researchers who want to explore attitudes toward genomics and precision medicine. The association of concerns about precision medicine activities with demographic variables such as religion and politics, as well as higher levels of education, suggests that further education on genomic and precision activities alone is unlikely to shift AGPM scores significantly. METHODS: We wrote items to represent psychological and health benefits of precision medicine activities, and concerns about privacy, social justice, harm to embryos, and interfering with nature. We validated the measure through factor analysis of its structure, and testing associations with trust in the health information system and demographic variables such as age, sex, education, and religion. RESULTS: The AGPM had excellent alpha reliability (.92) and demonstrated good convergent validity with existing measures. Variables most strongly associated with higher levels of concern with precision medicine activities included: regular religious practice, republican political leanings, and higher levels of education.

Navigating Complex, Ethical Problems in Professional Life: a Guide to Teaching SMART Strategies for Decision-Making.

This article demonstrates how instructors of professionalism and ethics training programs can integrate a professional decision-making tool in training curricula. This tool can help trainees understand how to apply professional decision-making strategies to address the threats posed by a variety of psychological and environmental factors when they are faced with complex professional and ethical situations. We begin by highlighting key decision-making frameworks and discussing factors that may undermine the use of professional decision-making strategies. Then, drawing upon findings from past research, we present the "SMART" professional decision-making framework: seeking help, managing emotions, anticipating consequences, recognizing rules and context, and testing assumptions and motives. Next, we present a vignette that poses a complex ethical and professional challenge and illustrate how each professional decision-making strategy could or should be used by characters in the case. To conclude, we review a series of educational practices and pedagogical tools intended to help trainers facilitate trainee learning, retention, and application of "SMART" decision-making strategies.

How to Navigate Trainee-Mentor Relationships and Interpersonal Dynamics in the Lab.

Relationships with mentors and labmates are defining aspects of a researcher's journey in science. Ideally, these interactions are outstanding opportunities to learn from others and provide the basis for lifelong collaborations. Unfortunately, sometimes interpersonal dynamics in the lab are challenging. Graduate students entering the lab can greatly benefit from advice about navigating the interpersonal aspects of doing science. This article covers essential recommendations for developing a good trainee-mentor relationship and working well with peers in the lab, or being a "good lab citizen." Lab members-especially graduate students-often spend more time with labmates than with their friends and family during their graduate career, making these relationships essential to their well-being. The guidance also covers some advice for handling a tense relationship or problematic work environment. Finally, the advice concludes by discussing how to manage the fear of failure, overcome imposter syndrome, develop self-awareness, and cope with stress. These four issues are fundamental to success in research but are not discussed with graduate students as much as may be necessary. © 2021 Wiley Periodicals LLC.

How to Conduct Responsible Research: A Guide for Graduate Students.

Researchers must conduct research responsibly for it to have an impact and to safeguard trust in science. Essential responsibilities of researchers include using rigorous, reproducible research methods, reporting findings in a trustworthy manner, and giving the researchers who contributed appropriate authorship credit. This "how-to" guide covers strategies and practices for doing reproducible research and being a responsible author. The article also covers how to utilize decision-making strategies when uncertain about the best way to proceed in a challenging situation. The advice focuses especially on graduate students, but is appropriate for undergraduates and experienced researchers. It begins with an overview of responsible conduct of research, research misconduct, and ethical behavior in the scientific workplace. The takeaway message is that responsible conduct of research requires a thoughtful approach to doing research in order to ensure trustworthy results and conclusions, and that researchers receive fair credit. © 2021 Wiley Periodicals LLC.

Applying the Delphi Method to Define a Focus for the National Outcomes Registry for Tracking the Hand (NORTH).

Surgical registries have provided reliable, generalizable, and applicable clinical data that have shaped many fields. Broad collection of defined data can answer clinical questions with greater numbers of patients and more ability to generalize to routine clinical care than randomized trials. National hand surgical registries exist outside the United States. Before the pursuit of a registry, the focus of such an effort must be defined to ensure that registry goals are feasible. This article presents the consensus process conducted by the American Society for Surgery of the Hand's Registry Task Force exploring potential diagnoses for a hand registry.

Parental Attitudes toward Artificial Intelligence-Driven Precision Medicine Technologies in Pediatric Healthcare.

Precision medicine relies upon artificial intelligence (AI)-driven technologies that raise ethical and practical concerns. In this study, we developed and validated a measure of parental openness and concerns with AI-driven technologies in their child's healthcare. In this cross-sectional survey, we enrolled parents of children <18 years in 2 rounds for exploratory (n = 418) and confirmatory (n = 386) factor analysis. We developed a 12-item measure of parental openness to AI-driven technologies, and a 33-item measure identifying concerns that parents found important when considering these technologies. We also evaluated associations between openness and attitudes, beliefs, personality traits, and demographics. Parents (N = 804) reported mean openness to AI-driven technologies of M = 3.4/5, SD = 0.9. We identified seven concerns that parents considered important when evaluating these technologies: quality/accuracy, privacy, shared decision making, convenience, cost, human element of care, and social justice. In multivariable linear regression, parental openness was positively associated with quality (beta = 0.23), convenience (beta = 0.16), and cost (beta = 0.11), as well as faith in technology (beta = 0.23) and trust in health information systems (beta = 0.12). Parental openness was negatively associated with the perceived importance of shared decision making (beta = -0.16) and being female (beta = -0.12). Developers might support parental openness by addressing these concerns during the development and implementation of novel AI-driven technologies.