Multilevel challenges to equitable inclusion of children in trials when parents use languages other than English: A qualitative report from Children's Oncology Group's Diversity and Health Disparities Committee Language Equity Working Group.

BACKGROUND: Increasing representation in clinical trials is a priority for the National Cancer Institute and Children's Oncology Group (COG). Our survey of COG-affiliated institutions revealed that many sites have insufficient processes and resources to enroll children whose parents use languages other than English (LOE). We describe reported barriers and facilitators to enrolling children in clinical trials when parents use LOE and propose opportunities for improvement. PROCEDURES: We sent a 20-item survey to COG-affiliated institutions. Five items allowed respondents to expand on replies to questions about (a) local institutional review board (IRB) requirements regarding translation of consent documents, (b) contributors to provider discomfort consenting parents who use LOE, (c) available language services and resources, and (d) barriers to enrolling children whose parents use LOE or offer ideas about approaches to improvements. Two pairs of researchers independently coded free-text responses and compared results for concordance. RESULTS: A total of 139 (N = 230; 60%) institutions returned the survey. Respondents were mainly physician principal investigators (n = 79/139; 57%) at the United States sites (n = 118/139; 85%) serving less than 100 newly diagnosed children per year (n = 99/139, 71%). They described challenges at multiple levels. Proposed approaches to improvements included centralized provision of translated materials and video educational materials in various languages, and collaborating with IRBs on regulatory processes that protect families and facilitate equitable clinical trial access. CONCLUSIONS: Clinical trial consortia, such as COG, face challenges in enrolling representative samples. Further research is required to design and implement multilevel interventions to ensure equitable access for all, regardless of language used, and mitigate disparate research participation.

Adjusting for Underrepresentation Reveals Widespread Underestimation of Parkinson's Disease Symptom Burden.

BACKGROUND: Clinical research is limited by underrepresentation, but the impact of underrepresentation on patient-reported outcomes in Parkinson's disease (PD) is unknown. OBJECTIVES: To produce nationwide estimates of non-motor symptom (NMS) prevalence and PD-related quality of life (QOL) limitations while accounting for underrepresentation. METHODS: We performed a cross-sectional analysis of data from the Fox Insight (FI) study, an ongoing prospective longitudinal study of persons with self-reported PD. Using epidemiologic literature and United States (US) Census Bureau, Medicare, and National Health and Aging Trends Study data, we simulated a "virtual census" of the PD population. To compare the PD census to the FI cohort, we used logistic regression to model the odds of study participation and calculate predicted probabilities of participation for inverse probability weighting. RESULTS: There are an estimated 849,488 persons living with PD in the US. Compared to 22,465 eligible FI participants, non-participants are more likely to be older, female, and non-White; live in rural regions; have more severe PD; and have lower levels of education. When these predictors were incorporated into a multivariable regression model, predicted probability of participation was much higher for FI participants than non-participants, indicating a significant difference in the underlying populations (propensity score distance 2.62). Estimates of NMS prevalence and QOL limitation were greater when analyzed using inverse probability of participation weighting compared to unweighted means and frequencies. CONCLUSIONS: PD-related morbidity may be underestimated because of underrepresentation, and inverse probability of participation weighting can be used to give greater weight to underrepresented groups and produce more generalizable estimates. © 2023 International Parkinson and Movement Disorder Society.

Inclusion, characteristics, and outcomes of male and female participants in large international perioperative studies.

BACKGROUND: We compared baseline characteristics and outcomes and evaluated the subgroup effects of randomised interventions by sex in males and females in large international perioperative trials. METHODS: Nine randomised trials and two cohort studies recruiting adult patients, conducted between 1995 and 2020, were included. Baseline characteristics and outcomes common to six or more studies were evaluated. Regression models included terms for sex, study, and an interaction between the two. Comparing outcomes without adjustment for baseline characteristics represents the 'total effect' of sex on the outcome. RESULTS: Of 54 626 participants, 58% were male and 42% were female. Females were less likely to have ASA physical status ≥3 (56% vs 64%), to smoke (15% vs 23%), have coronary artery disease (21% vs 32%), or undergo vascular surgery (10% vs 23%). The pooled incidence of death was 1.6% in females and 1.8% in males (risk ratio [RR] 0.92; 95% confidence interval [CI]: 0.81-1.05; P=0.20), of myocardial infarction was 4.2% vs 4.5% (RR 0.92; 95% CI: 0.81-1.03; P=0.10), of stroke was 0.5% vs 0.6% (RR 1.03; 95% CI: 0.79-1.35; P=0.81), and of surgical site infection was 8.6% vs 8.3% (RR 1.03; 95% CI: 0.79-1.35; P=0.70). Treatment effects of three interventions demonstrated statistically significant effect modification by sex. CONCLUSIONS: Females were in the minority in all included studies. They were healthier than males, but outcomes were comparable. Further research is needed to understand the reasons for this discrepancy. CLINICAL TRIAL REGISTRATION: International Registry of Meta-Research (UID: IRMR_000011; 5 January 2021).

Gender and Racialization Status of Medical Eponym Namesakes: Cross-sectional Study.

BACKGROUND: Many medical eponyms were established when women and racialized individuals were excluded from medicine. The objective of this study was to determine the gender and racialization status of individuals whose names are incorporated in medical eponyms. METHODS: This study is a cross-sectional analysis of gender and racialization of medical eponym namesakes. The main outcome measures were the study of gender and racialization of medical eponym namesakes found in Whonamedit, Mosby's Medical Dictionary, and the International Classification of Diseases (version 10). The gender and whether the individual was a racialized person were determined using pictures and other available information. RESULTS: We identified 3484 unique eponyms. White men represented the majority of medical eponym namesakes (2190 of 2327, 94.1%) followed by white women (85 of 2327, 3.7%), racialized men (49 of 2327, 2.1%), and racialized women (3 of 2327, 0.1%). In the ICD-10 sub-analysis, white men represented the majority of medical eponym namesakes (476 of 514, 92.6%) followed by white women (22 of 514, 4.3%), racialized men (14 of 514, 2.7%), and racialized women (2 of 514, 0.4%). CONCLUSION: Most medical eponyms represent men and white individuals, highlighting the underrepresentation of women and racialized individuals. This indicates a need to re-examine the ongoing use of medical eponyms which may entrench sexism and racism in medicine and contribute to an environment that makes some feel unwelcome or undervalued.

A Neurological Surgery Care Protocol for the LGBTQIA+ Community.

This research aims to propose a neurological surgery care protocol for the lesbian, gay, bisexual, transgender, queer, questioning, intersex, or asexual (LGBTQIA+) community. In recent years, people belonging to the LGBTQIA+ community have started to come out and express their identity due to growing awareness and various factors like the implementation of legal protections and rights in several countries; it is well documented in the literature that this community faces unique health needs as well as barriers and inequalities in healthcare. The lack of tailored training for medical specialists affects the level of quality and access to medical care for these individuals, and neurosurgical care is no exception. This literature review included studies in scientific journals and articles discussing problems, best practices, and gaps in the existing neurological surgical care protocols for LGBTQIA+ people. Accordingly, it highlights shared challenges such as healthcare-related difficulties, communication barriers, discrimination, and stigmatization. The primary aim is to create a safe and respectful care environment that ensures fair medical treatment to all patients regardless of their sexual orientation or gender identity. The review sheds light on the need for inclusive and sensitive neurosurgical care to improve clinical outcomes and the experience of patients belonging to the LGBTQIA+ community, thereby ensuring an environment of dignified treatment and satisfactory recovery from neurosurgical events.

Gender Disparities in Endowed Professorships Within Orthopaedic Surgery.

Background Orthopaedic surgery has the lowest number of full-time faculty positions held by women, at 19%, with endowed chairs among the most coveted and advantageous. We examined the characteristics of endowed professors from the US top 100 orthopaedic academic centers and highest-funded musculoskeletal (MSK) researchers to determine if gender is associated with endowed professorship. Additionally, we sought to determine if gender is associated with increased NIH funding for top-performing musculoskeletal researchers.  Methods Our primary study group included the top 100 orthopaedic academic centers defined by US News World Report and Doximity's rankings. Our secondary study group examined the top MSK researchers, defined as principal investigators, who received >$400,000 in annual NIH funding from 2018 to 2021. Orthopaedic departments included MSK researchers and subspecialties within orthopaedics and medicine. Publicly available sources were used to compile institutional, gender, H-index, citation number, and subspecialty data on endowed professors; statistical comparisons were calculated. Results Within the top 100 orthopaedic academic departments, 4674 faculty were identified. Seven hundred and thirty-three (15.68%) were identified as women, 3941 as men (84.32%). One hundred and ninety-four held endowed professorships; 13 were awarded to women (6.7%), and 185 (95.3%) were awarded to men, with a significant odds ratio (OR) of 2.95, favoring men. For MSK researchers, the OR increases to 11.4. Arthroplasty and sports had the highest numbers of endowments. Significant differences in H-index, publications, and graduation year were identified between men and women for top MSK researchers and orthopaedic-trained surgeons; however, these differences disappeared when considering heterogenous orthopaedic departments that included medicine subspecialties, plastic surgery, hand surgery, and neurosurgery. Additional gender differences were observed in endowment names, with awards commemorating 51.5% men, 7.2% women, and 34% families or groups. Conclusion Gender inequities at the endowment level are substantial, and there are very few women in musculoskeletal medicine to achieve endowments. Differences in H-index, publications, and graduation year between men and women MSK researchers and orthopaedic-trained surgeons, but not combined orthopaedic, PM&R, and medical subspecialty departments, suggest unique challenges in orthopaedic surgery environments and histories that may contribute to endowment disparity. Gender was not found to be associated with funding bias for top-performing musculoskeletal researchers.

Amplifying Their Voice: Inclusive Healthcare Provider Perspectives to Improve Advancement, Resilience, and Retention.

BACKGROUND AND OBJECTIVES:  Addressing the issues of workplace advancement, resilience, and retention within medicine is crucial for creating a culture of equity, respect, and inclusivity especially towards women and nonbinary (WNB) providers including advanced practice providers (APPs), most notably those from marginalized groups. This also directly impacts healthcare quality, patient outcomes, and overall patient and employee satisfaction. The purpose of this study was to amplify the voices on challenges faced by WNB providers within a pediatric academic healthcare organization, to rank workplace interventions addressing advancement, resilience, and retention highlighting urgency towards addressing these issues, and, lastly, to provide suggestions on how to improve inclusivity. METHODS:  Participants were self-identified WNB providers employed by a pediatric healthcare organization and its affiliated medical university. An eligibility screener was completed by 150 qualified respondents, and 40 WNBs actually participated in study interviews. Interviews were conducted using a semi-structured interview guide to rank interventions targeted at improving equity, with time allotted for interviewees to discuss their personal lives and how individual circumstances impacted their professional experiences. RESULTS:  WNB providers called for efficient workflows and reducing uncompensated job demands. Support for family responsibilities, flexible financial/compensation models, and improved job resources all were endorsed similarly. Participants ranked direct supervisor and leader support substantially lower than other interventions.  Conclusions: Career mentorship and academic support for WNB individuals are recognized interventions for advancement and retention but were not ranked as top priorities. Respondents focused on personal supports as they relate to family, job resources, and flexible compensation models. Future studies should focus on implementing realistic expectations and structures that support whole lives including professional ambitions, time with family, personal pursuits, and self-care.

Barriers to Parental Leave During Training: Time for Change.

BACKGROUND: Standardized parental leave policies for medical trainees are lacking, and barriers may differ among specialties. We aimed to characterize experiences of physicians who became parents during training and to identify particular issues for surgical trainees compared to their non-surgical peers. METHODS: We distributed an electronic survey to physician parents via social media platforms from 10/2019 to 02/2020. Inclusion required becoming a parent during training. Responses were collected and standard descriptive and comparative analyses were performed. RESULTS: Surveys were received from 64 physicians representing diverse specialties: 48 (74%) non-surgical respondents (NSR) and 16 (26%) surgical respondents (SR). Among all respondents, 25 (39%) reported a formal institutional policy for parental leave and 49 (76%) wished for more time off. Overall, respondents took a mean of 7.5 ± 5.2 (range 0-14) weeks of parental leave. However, NSR took 8.7 ± 5.8 weeks, while SR took 4.7 ± 2.7 (P = .006). Reported barriers to parental leave across specialties included graduation requirements (NSR 58% vs. SR 68% P = .46), peer pressure/perception (NSR 59% vs. SR 58% P = .97), and pressure from institutional leadership (NSR 31% vs. SR 35% P = .77). A substantial portion (28, 43%) of respondents had additional children during training, taking less time off for the second child (5.1 ± 7.4 weeks; 0-12). CONCLUSION: A minority of respondents reported formal institutional parental leave policies, while an overwhelming majority felt that their time off was inadequate. Surgical trainees took shorter parental leaves than their non-surgical counterparts. Cultural and professional changes are crucial in promoting wellness and healthy transitions into parenthood.

Lifting as we climb: Experiences and recommendations from women in neural engineering.

Neural engineering is an emerging and multidisciplinary field in which engineering approaches are applied to neuroscience problems. Women are underrepresented in engineering fields, and indeed in science, technology, engineering, and mathematics (STEM) fields generally. Underrepresentation of women is particularly notable at later academic career stages, suggesting that even though women are interested in the field, barriers exist that ultimately cause them to leave. Here, we investigate many of the obstacles to women's success in the field of neural engineering and provide recommendations and materials to overcome them. We conducted a review of the literature from the past 15 years regarding the experiences of women in academic careers, as well as reports on the number of women in fields closely related to neural engineering from the National Science Foundation (NSF) and the American Society for Engineering Education (ASEE). Additionally, we interviewed six women in neural engineering who are involved in initiatives and outreach concerning the inclusion and experiences of women in engineering. Throughout the literature and interviews, we identified common themes spanning the role of identity and confidence, professional relationships, career-related hurdles, and personal and professional expectations. We explore each of these themes in detail and provide resources to support the growth of women as they climb within the field of neural engineering.

The use of language in autism research.

The past three decades have seen a major shift in our understanding of the strong links between autism and identity. These developments have called for careful consideration of the language used to describe autism. Here, we briefly discuss some of these deliberations and provide guidance to researchers around language use in autism research.

Published Support for Wellness, Diversity, Equity, and Inclusion Among Internal Medicine Residency Program Websites.

INTRODUCTION: The objective of this study was to review internal medicine residency program websites in the United States based on their published support for wellness, diversity, equity, and inclusion concepts. Inclusion of wellness, diversity, equity, and inclusion on program websites can serve as critical student benchmarks, and it may be paramount to optimize residency program websites accordingly. METHODS: This is a cross-sectional study of the websites of 597 internal medicine residency programs accredited by the Accreditation Council for Graduate Medical Education between March 25 and April 25, 2022. The websites were assessed based on 22 characteristics consisting of wellness verbiage, gender and underrepresented in medicine evaluation of faculty and residents, and diversity, equity, and inclusion-related semantics. Website photos were used to assess ethnic/sex representation. These attributes were devised by two sequentially set up focus groups consisting of 49 racially, ethnically, and gender-diverse medical students. RESULTS: A total of 579 internal medicine programs were reviewed. Only 239 (41%) had a dedicated page for resident wellness activities and efforts, while 134 (19%) had no mention of the concept throughout their web pages. Similarly, only 136 (23%) had a dedicated wellness officer, whether faculty or resident, who was focused on departmental interests. Gender diversity could be determined in 445 (77%) and 459 (79%) websites for faculty and residents, respectively. Underrepresented in medicine faculty and residents was noted in 293 (51%) and 393 (68%) of websites, respectively. A diversity, equity, and inclusion section was present in 172 (30%) of programs, with 93 (16%) having an assigned faculty or resident. Chairpersons or program directors stressed diversity, equity, and inclusion in up to 456 (79%) of the websites, with 181 (31%) having program mission statements or goals that include diversity, equity, and inclusion verbiage. CONCLUSION: A deficit of various essential wellness, diversity, equity, and inclusion attributes persists across internal medicine residency websites. Residency programs would benefit from optimizing their websites to attract more diverse applicants.

Disabled in academia: to be or not to be, that is the question.

The authors explore the real-life issue of diversity disclosure within academia. The breadth of disability and discrimination is framed within the context of high demands and competitiveness. While some institutions are supportive, the culture of ableism, stigmatization, and the disabling barriers make disclosure of disability a complex and difficult decision. The authors discuss the importance of not only normalizing varying abilities, but embracing and valuing the diversity and contributions that individuals with disabilities bring to the academic environment.

Addressing the Gender Gap in Research: Insights from a Women in Neuroscience Conference.

There has been growing interest in quantifying the proportion of women participating in scientific conferences, publications, and committees. Numbers reveal persistent disparities, but offer few cures to the root causes of the gender gaps in research. Toward remediation, we outline five lessons learned through organizing two conferences for Women in Neuroscience (WiN). These recommendations build on participants' comments, and aim to better support women in their scientific paths and help provide equal opportunity.

Equality and diversity in health governance systems: are we getting it right and are there lessons from COVID-19?

The COVID-19 pandemic highlighted major challenges in governance and inequalities particularly among those from Black, Asian and minority ethnic (BAME) groups. This paper focuses on the BAME community and explores this through a governance lens, with particular reference to the representation and functioning of boards involved in healthcare and building a transparent culture. To illustrate this, the paper utilises a series of structured reflective questions with model answers termed Right Question, Right Answer and links to the Centre for Quality in Governance (CQG) Maturity Matrix. This article highlights the need to improve diversity and accountability of health and care organisations to their staff and local population. For governance to be effective, it must be aligned and comply with healthcare system regulations to ensure improvement of legislative acts and standards. The paper aims to inform government policy by moving from rhetoric, or merely describing challenges, to action and change by increasing accountability.