The framework and practical tools presented in this article enable neurodivergent scientists, mentors, research teams, and institutions to better understand the cognitive and environmental factors that shape scientific work. By normalizing transparency, continuous learning, and iterative improvement, this framework and its practical tools foster inclusive research cultures that unlock scientific potential and accelerate discovery.

Scientific innovation thrives on diverse problem-solving for modern interdisciplinary challenges. Neurodivergent scientists provide unique perspectives essential for high-impact discovery. We use the 'Neurodiversity Iceberg' to show how cognitive strengths drive innovative research and to offer a plan for mentors and institutions to tap into the potential of their entire scientific workforce.

Little is known about the long-term effectiveness of responsible conduct of research (RCR) training and factors that support transfer of this learning to real-world settings after formal training concludes. We conducted a three-part study to explore short- and long-term effects of a culturally inclusive RCR training and a novel learning transfer intervention on professional decision-making skills. Biology and biomedical doctoral students across three cohorts participated in an RCR course focused on developing professional decision-making skills. In Study 1, students from Cohort 1 (N = 109) received the baseline control training, and students from Cohorts 2 and 3 (N = 195) received a revised culturally inclusive training. In Study 2, students from Cohorts 2 and 3 were randomly assigned to either a control group or a group receiving a monthly learning transfer intervention for 5 months after RCR training. The learning transfer intervention included identifying recent professional challenges, actions taken in response to challenges, and intentions to use professional decision-making strategies in the future. Study 3 involved follow-up interviews (N = 11) about experiences with the learning transfer intervention. Participants who received the revised training scored higher on professional decision-making compared to the baseline training. The learning transfer intervention did not improve self-reported use of professional decision-making skills. However, participants with low pre-course scores on professional decision-making saw sustained gains in these skills 6 months after the RCR training. Most participants interviewed about the learning transfer intervention perceived it as beneficial for being more reflective and intentional about using professional decision-making strategies.

BackgroundWeb-based patient portals can benefit adolescents and their caregivers by increasing access and providing greater understanding of one’s health information, enhancing communication with clinicians, and supporting caregiver influence. Despite these benefits, adolescent uptake has been low with high attrition rates. Feedback from adolescents and caregivers is essential to improve the uptake and usability of the web-based patient portal. ObjectiveThe aim of the study is to identify advice for medical informatics administrators and clinicians directed at improving the adolescent and caregiver experience with the web-based patient portal. MethodsCaregivers completed a demographic survey followed by separate qualitative, semistructured interviews with adolescent-caregiver dyads with and without chronic illnesses. Caregivers and adolescents were interviewed separately regarding advice for administrators and clinicians on several topics, including (1) providing adolescent and caregiver portal access, (2) how doctors should discuss the portal with families and the content of their notes, and (3) what general advice they had to improve portal access for families. We performed thematic analysis to develop a codebook, and team members applied these codes to the transcripts and analyzed for overlaps and contrasts. ResultsWe performed 102 interviews with 51 dyads of caregivers and adolescents (26 with chronic illness and 25 without chronic illness). The majority of adolescents and their caregivers were White (adolescents: n=28, 55% and caregivers: n=28, 55%) or Black (adolescents: n=21, 41% and caregivers: n=21, 41%) and female (adolescents: n=30, 59% and caregivers: n=50, 98%). The majority of caregivers had accessed their child’s portal (n=33, 65%), whereas the majority of adolescents had not (n=17, 33%). We identified three themes related to adolescent and caregiver advice: (1) encouraging and supporting portal use, (2) recognizing the emotional experience of portal use, and (3) improving portal usability, understandability, and individualization. Adolescents and their caregivers provided specific recommendations regarding initial access or enrollment including improving resources and clinician encouragement as well as improving the usability in terms of user-friendly design, understandable language, and clear expectations. Finally, caregivers and adolescents had varied opinions on confidentiality and access but emphasized the importance of understanding the emotional impact and providing guidance to caregivers and adolescents. ConclusionsAdolescents and caregivers outlined critical advice to medical informatics administrators and clinicians to improve the patient portal uptake and usability. Further research is required to determine the best application for these recommendations, including the potential use for advance technologies to simplify results and clinical documentation, strategies to improve the user-friendly design, and how clinicians should communicate with families now that clinical documentation is viewable to patients and caregivers.

Purpose: The contemporary literature evaluating outcomes after peripheral nerve injury (PNI) does not rigorously and adequately address the domains (motor, sensory, function, and pain) experienced by patients. Our goal was to develop a core outcomes set (COS) to evaluate outcomes after PNI. Methods: We adhered to recommended guidelines for COS development. Following a systematic review of the literature, we assembled a panel of experts and used a modified Delphi to assess the appropriateness of candidate measures to evaluate recovery after PNI. We convened 20 experts in PNI using two initial electronic surveys, one in-person meeting, and a final electronic survey. We arrived at consensus (≥70% of panelists) for required and recommended measures to evaluate outcomes after PNI. Results: Our panel arrived at consensus for motor, sensory, function, and pain outcomes in patients after upper and lower extremity nerve injury. We designated the measures to use and the timing and administration of these measures. Conclusions: We developed a COS that can be used by clinicians and researchers who evaluate patients with PNI. Our goal is to implement the COS in a unified manner, facilitating comparison in the literature as well as collaboration among centers. Type of study/level of evidence: Diagnostic V.

Those who lead research teams have myriad roles and responsibilities that are pivotal to both producing rigorous and responsible scientific work and creating a supportive research environment that cultivates this work. We begin by presenting a leadership, management, and mentoring (LMM) framework focused on three critical roles researchers must play that have direct impact on the scientific work, the work environment, and research team dynamics: the role of research leader, research manager, and research mentor. Research leadership involves fostering a healthy research culture by building relationships where team members feel respected and supported. Research management involves providing oversight and direction of day-to-day operations to ensure tasks are done effectively, rigorously, and responsibly. Research mentoring involves providing opportunities and support to team members so that they develop professionally and build their careers. While these three roles are distinct, there is overlap in the professional, interpersonal, and intrapersonal skills that underlie their effective performance, such as communication, active listening, emotion management, and self-reflection. We also draw attention to some of the challenges when performing LMM roles. A variety of sources and types of evaluation measures may be used to comprehensively assess the functioning of a research team and its leader(s). We illustrate key domains for measurement, example indicators of effectiveness in those domains, and examples of the types of measures that could be used for evaluation. We discuss how top-down evaluation, bottom-up evaluation, and self-evaluation methods could be employed for data collection and note that each of these methods has strengths and limitations. We recommend multiple sources and types of data but acknowledge that evaluation must be feasible and practical. We note best practices and key implementation considerations for each method of measurement. When combined, these three methods provide a robust approach for evaluating LMM. We conclude with a description of key considerations for supporting the evaluation and application of LMM in real-world settings at academic institutions. Such considerations include senior leadership buy-in and communication about LMM expectations and providing appropriate framing, time, support, and incentives for LMM. We also highlight institutional risk factors that may inadvertently undermine LMM goals.

Purpose United States healthcare systems have enacted varied adolescent online patient portal policies. No prior work has established whether these policies are acceptable to adolescents and parents. Methods Mixed-method Delphi approach with 18 parents and 18 adolescents with and without chronic illness. We presented 19 policies related to (1) who can access different types of information through the portal; (2) timing of results release; and (3) portal messaging policies, such as whether individuals are charged for portal messages. Panelists voted on whether they “supported,” “could live with,” or “opposed” each policy. Results Thirty-six panelists completed surveys with no attrition. For access-related policies, panelists opposed prohibiting parent or adolescent access, and they accepted policies that provided transparent access to sensitive and nonsensitive information for parents and adolescents. Panelists failed to reach consensus about whether adolescents should have the granular ability to determine which parts of the medical record their parents can see. For policies related to timing of release, panelists found either immediate or delayed access to results to be acceptable, although more panelists supported immediate access. For portal messaging policies, panelists supported the ability of parents and adolescents to send messages and opposed being charged for portal messages. Panelists found it acceptable for adolescents to see messages written by their parents, but failed to reach consensus on whether parents should see messages written by adolescents. Discussion Some healthcare systems have implemented adolescent portal policies that panelists opposed or found concerning. Hospital leaders should consider these data as they re-evaluate institutional policies.

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.

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.

Objectives:Patient engagement is critical for the effective development and use of artificial intelligence (AI)-enabled tools in learning health systems (LHSs). We adapted a previously validated measure from pediatrics to assess adults' openness and concerns about the use of AI in their healthcare. Study Design:Cross-sectional survey. Methods:We adapted the 33-item "Attitudes toward Artificial Intelligence in Healthcare for Parents" measure for administration to adults in the general US population (AAIH-A), recruiting participants through Amazon's Mechanical Turk (MTurk) crowdsourcing platform. AAIH-A assesses openness to AI-driven technologies and includes 7 subscales assessing participants' openness and concerns about these technologies. The openness scale includes examples of AI-driven tools for diagnosis, prediction, treatment selection, and medical guidance. Concern subscales assessed privacy, social justice, quality, human element of care, cost, shared decision-making, and convenience. We co-administered previously validated measures hypothesized to correlate with openness. We conducted a confirmatory factor analysis and assessed reliability and construct validity. We performed exploratory multivariable regression models to identify predictors of openness. Results:A total of 379 participants completed the survey. Confirmatory factor analysis confirmed the seven dimensions of the concerns, and the scales had internal consistency reliability, and correlated as hypothesized with existing measures of trust and faith in technology. Multivariable models indicated that trust in technology and concerns about quality and convenience were significantly associated with openness. Conclusions:The AAIH-A is a brief measure that can be used to assess adults' perspectives about AI-driven technologies in healthcare and LHSs. The use of AAIH-A can inform future development and implementation of AI-enabled tools for patient care in the LHS context that engage patients as key stakeholders.

This Viewpoint discusses the use of artificial intelligence in pediatrics.

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.

ObjectiveTo identify perceived benefits, problems, facilitators, and barriers to adolescent online patient portal useStudy designQualitative, 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.ResultsWe 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.ConclusionParents 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.

Background: A person's cultural background shapes how they interpret and navigate problems. Given that large numbers of international researchers work and train in the U.S. we sought to better understand how researchers use the decision-making strategy of seeking help to navigate ethical and professional challenges.Methods: Participants (N = 300) were researchers working or training in the U.S. who were born in East Asia (EA) or born in the U.S. They completed a screening survey; then a subset completed think-aloud interviews (n = 66) focused on how they would respond to three hypothetical research scenarios.Results: Thematic analysis of the transcripts showed that seeking help was a commonly endorsed strategy, with some nuances between groups. Themes included seeking help in the form of getting advice, seeking someone to help solve the problem, and gathering information. Endorsement of the seeking help strategy frequently depended on participants' relationships; desiring to seek help from people they trusted. Notably, EA participants tended to prefer seeking help in ways that avoided reputational harm to others.Conclusion: A better understanding of how researchers from different cultural backgrounds use decision-making strategies can inform how to make educational programs more inclusive and comprehensive to more effectively develop researchers' ethical and professional decision-making skills.

BackgroundWeb-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. ObjectiveWe 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. MethodsWe 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. ResultsWe 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. ConclusionsInformatics 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.

Background: There are notable differences in how adult patients with traumatic brachial plexus injuries (BPI) are evaluated and treated.Purpose: To better understand existing philosophies, we used the Delphi method to measure and foster consensus on routine use of electrodiagnostic testing, ultrasound, magnetic resonance imaging (MRI), and computed tomography (CT) myelograms prior to surgery. Panelists were 10 peripheral nerve surgeons board certified in their respective specialties at 5 academic medical centers in the United States.Methods: We presented 2 cases (1 complete/pan-BPI and 1 upper trunk BPI) to panelists and asked how often they would order the following preoperative diagnostic tests: electrodiagnostic studies; ultrasound of the brachial plexus; MRI of the brachial plexus; CT myelogram. Our Delphi process included an initial survey with videoconference discussion after the first round. A second survey/videoconference round was conducted to further probe the items that did not reach consensus during the first round.Results: Among the 10 surgeons, there was consensus that prior to brachial plexus surgery electrodiagnostic studies and MRI should be routinely ordered and ultrasound of the brachial plexus should not be routinely ordered. The group did not reach consensus on whether CT myelogram should or should not be routinely ordered.Conclusions: Based on our panel's discussion, future work should focus on comparing the accuracy of CT myelogram and MRI for evaluation of cervical nerve root presence and viability.

Background Effective leadership and management practices contribute to responsible, high-quality research and the well-being of team members. We describe the development and initial validation of a measure assessing principal investigators' leadership and management practices and a measure of research team practices. Methods Using a cross-sectional survey design, 570 postdoctoral researchers funded by the National Institutes of Health reported on the perceived behaviors of their principal investigator (PI) and the research team. The PI leadership and management items factored into two dimensions: fostering relationships and directing research. Results Correlations of these new scales with existing, validated measures of ethical leadership and general leader behavior provided evidence of convergent validity. Providing evidence for criterion-related validity, scores on the new measures predicted lab climate for research ethics, self-reported productivity, and job satisfaction. Research team practices provided additional predictive value beyond leadership and management behaviors. Conclusions This study provides construct validity evidence for the new Leadership and Management in Science (LAMPS) Measure and the Research Team Practices (RTP) Measure. Qualitative responses to an open-ended item reinforced the importance of relationships and directive supervision for a positive environment. These measures can be useful tools for future research or may be useful for PIs seeking feedback about their practices.

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.

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.

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.